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So what do YOU think caused the Autoimmune Disease?

There's no better place to inquire than here to everyone's recollection of what was happening in their lives pre diagnosis. It could ( perhaps) give some clues as to what triggers autoimmune disorders. I personally, was under severe stress and anxiety pre diagnosis. I also went into peri menopause at 44 years of age. Now on HRT, Baracitinib for RA and anti anxiety meds.

Suzie x

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I was going through life stress when I got flu (proper lying in bed, high temperature, asleep 20 hours a day type thing) and a secondary bacterial infection. This triggered the RA.

I was going through stress at work when I had planned surgery and I got a serious post operative infection. This triggered the myasthenia.

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Hi crashdoll, sounds like your immune system was taking a battering with stress then the flu and so on. Stress appears to be the common denominator but we will wait to see others experiences. Thanks for sharing x

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Almost exactly what happened to me...

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Hi PFKAAde,

Sorry to hear you had almost same experience. How does it make you feel to read others similar stories ?

Suzie x

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Hi Suzie

It isn’t the first time this question has been asked in here and stress always seems to be one of the more common themes.

Think there has also been research into it but without looking I’m not sure.

Personally I believe it is a variety of factors that all combine to ‘trigger’ an autoimmune response. Genetics, environment (diet, smoking, exposure to chemicals etc) and stress all seem to factor in somewhere for some people.

🙏🏻

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Hi, Thanks for your thoughts on this. It's something I have questioned myself so many times , eliminating potential causes along the way. Others feedback of their personal thoughts as to the trigger has been so helpful in many ways. I have narrowed it down to a few causes ( mainly stress) and I STILL am stressed as my disease isn't under control yet. It could well be a vicious circle, in that the drugs may not be as effective if the stress levels are high? Who knows. It's mind-boggling really. Perhaps I need to try more techniques for coping with stress as well as yoga and mindfulness. The unity of this thread has been brilliant! To share and to be understood is a step in the right direction. xx

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Learning new techniques to help manage stress can only be a good thing anyway, no?

I forgot to say that another main trigger for me was a flu-like illness that lasted weeks and really floored me. Had never been that ill before then (was still in my invincible phase 😉) and it never really went away. I went back to work too soon as I’d already been off for two weeks, but I just couldn’t do it. Went off sick again and over the following few months started swelling up and having a lot of pain. Got the all clear from the oncologist (was quite relieved by that!), was referred to a rheumatogist who rather quickly diagnosed reactive arthritis. This never went away and was later changed to Rheumatoid.

And I was a smoker, drinker, party animal and had been for all of my 20s. Got poorly when I was 30.

🙏🏻

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Well I think a lot of people did the party thing in our 20's - I definitely did and I smoked and drank then too and danced into the wee small hours! Loved it! 😁. The flu - yes, that's been mentioned alot on this thread. A horrible draining unwellness the Flu is! I also was sent to oncology for biopsies on abnormally large lymph nodes around my neck and under arm. Got the all clear but was later informed that it was rheumatoid causing the enlargement of nodes. No wonder stress shows up! Wish I could go back to my 20's! 😁

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Yeah, 20s were good. What I can remember anyway. Don’t suppose I shall ever find myself lost on the dance floor as the sun starts to rise again...

Still, that was then. When I say flu I don’t think it was classic influenza, rather some other upper respiratory tract infection. Had worst cough ever and developed a ‘pleural rub’ (ow!) from coughing so much.

The oncologist was because my bloods were all over the place and so they stuck cameras in various places. When they looked in my stomach they said there was still food in there, it shouldn’t be - and we suspect gastric lymphoma.

It’s strange but it was such a relief to be told ReA. I thought / was told it would respond to meds and clear up.

Didn’t quite work like that.

🙏🏻

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Stress!

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Keep in touch.

Love Suzie x

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Good question! Hmm I would attribute mine to stress and working far too hard. I try to lead a more organic life now.

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Upon reading all your replies, I do recall going to see the hygienist, she was pretty hardcore with the cleaning. I recall the next day saying to my colleague my teeth felt like they were on fire, it was all very odd. I then contracted a kind of flu, it was the sickest I had ever felt for someone who was never ill. After that and very stressful events in between it was all downhill 😬. Never smoked, and not really a drinker (the odd one out with friends). My pain jumped from ankle to shoulder to fingers to knee - to diagnosis, November 2016 - to date. So there we have it, a life changing experience for us all but never insurmountable.

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Hi Hessie, I used to really enjoy going to the hygienist, it was the only thing I liked at the dentist! but your experience sounds really sore :( - ouch!

Suzie x

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It was frankly terrifying! I know I need to pay a visit but the thought fills me with dread - I have been relying on my dental brushes and electric toothbrush for now. I shall of course eventually pluck up the courage to go before the end of this year. Have an awesome weekend. 🌤

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I totally get that! Would feel the same. Have a lovely weekend too. x

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I have seen an Oral Hygienist once. I had changed dentist because I moved house...I was in my forties & had never been advised by my previous dentist to see one before.

The new dentist advised a visit.

NEVER AGAIN!

I came out with a bloody mouth, & the Hygienist actually asked why I was there as I had no plaque.

Turns out it's a "Nice little earner".

Ever after I drove the two hours back to my old dentist.

I'm 70+ , have all my own teeth, no dentures, a few fillings & I never see a Hygienist.

So always ask your dentist if it it's really necessary.

I did change to a dentist closer to home last year.....she agrees I do not need to see the Hygienist. An honest dentist...had no treatment yet, but I have high hopes she is competent!

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Jeez AgedCrone that's fantastic having all your own teeth! I thought I was doing well having all mine with a few fillings in my fifties! The only one in my family who has and the only one who has RA! A nice smile but horrible hands.

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My mother had lost all her teeth by the time she was 35 & the sight of dentures as a child freaked me out...so I became obsessive about cleaning my teeth.

Even now I'm a sucker for every new brush that appears. At the moment I have 3 electric brushes & numerous travelling battery brushes ........& don't get me started on toothpaste!

If you still have good teeth at fifty- they will probably outlast you! Ha!Ha!!

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Ha Ha - Good for you :) Here's a lovely smile just for you 😀 x

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A lot of stress for a lot of years :-/

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Keep in touch!

Love Suzie x

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Not me - it totally came out of the blue. I was on a cruise, having a great time, when one shoulder started to REALLY hurt. Then the other one. Then wrists. I have no idea why it started then.

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That's how mine started ( shoulder) . At that particular time I was emotionally ok but a few years before that and after a few months of shoulder pain ( wrong diagnosis of frozen shoulder & rotator cuff tears etc) I was more stressed

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Many of us know that shoulder pain.took Genpain since 2010 to mask it

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Same for me..playing tennis regularly, thought I had tennis elbow!

If only!!!

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Think my RA is hereditary...off my grandpa. I was never told what was wrong with him, but he was usually sat in his armchair whenever I went to see him as a youngster. When he did walk it was with shuffling small steps and for a very short distance. So it seems likely that he did have RA.

What a dirty swine handing it down to me! If he was still alive then I'd give him what for!

Hope I don't pass my RA on to any of my descendants.

Does anyone know what medication he would have been given back in the mid-fifties to mid sixties when he passed away? Must have been absolute hell if you had it bad back then.

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Must have been hell indeed wishbone. I was asked ( as per everyone would be) if any family had RA. My mum told me my granny's sister had it and she was in a wheelchair and her hands were deformed. I doubt from that there was efficient drugs at that time.

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I believe aspirin was used for what little good that did. I imagine opiates would have been the main meds back then. I wonder when anti-inflammatories came on the scene?

Think I can recall my grandpa's hands being deformed as well.

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Aspirin and whisky.... aspirin is a weak anti-inflammatory. If his medical treatment was tip-top he might have had gold treatments post 1947. (Too expensive for ordinary people pre-NHS). Ibuprofen appeared in 1962.

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Aspirin and whiskey!...no wonder he was stuck in his chair all day! :-)

He was an ex-coal miner living in the Welsh mining valleys, so unlikely to be receiving tip-top treatment.

Thanks helix

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I remember a bottle of tincture of heroin in our bathroom cupboard way back when, and laudanum. So opioids in common use!

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He was a rough tough Welsh ex-coal miner who never let on how much pain he was in.

It must have been pretty bad though as he was stiff as a board and his walking was abysmal.

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Oops - effective drugs. Must have had Fibro foggy brain on 😂

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Back in the 60s my Gran was given codeine and I heard that she also had gold injections. Her hands were awfully sausage like and deformed and I do remember her complaining if I touched them as she obviously hurt like hell. I don't have parents to ask if she truly had RA but my sister, older than me by 11 years, so more aware of things than I was as a kid, said she did. I too wonder if I have passed on the gene to my son, or my granddaughter, or other elder granddaughter and 2 great grandchildren with whom I have no contact.

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Thanks for sharing your story. I don't think RA is hereditary.

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We can only hope they haven't got my dodgy gene type! 😆

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I'm not so sure... I'm told it can skip generations...

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I've heard this too. Fits with mine being hereditary.

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From what I've heard and read it isn't a specific autoimmune disease that is inherited, but a genetic predisposition to autoimmune in general. My family has many different types of autoimmune diseases.

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Me neither, my parents passed away when I was fairly young. A few family members are still alive but they don't know either.

Fingers crossed we haven't passed on this lousy gene..

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I think Gold Injections were around then?

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Living in the deprived South Wales mining valleys back then, he'd be lucky to get a copper bracelet. :-)

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That's true .....although we still have our aches & pains we are spoiled when you look back to how pain was dealt with back then.

Although try telling me that when one part or other is hurting!

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So true!

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I had a bad fall , my face took most of the impact and I broke/ cracked many teeth. I had months of root canal treatment and 3 courses of antibiotics in quick succession to try and preserve the teeth. It all left me feeling a bit 'yucky'. I then got a bad cold, it floored me for weeks and I never really fully recovered. My right foot became very painful, with a raised red inflamed patch and I felt quite unwell, the rest is history....

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Wow! How interesting and how painful for you :(

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Ouch!!..... :-(

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I’ve had auto immune issues my whole life! I chalk them up to childhood trauma.

Horrible environmental allergies and allergic to all antibiotics

Growing pains, hips, legs and feet

Slow to heal wounds

Kidney infections and stones

But all in all very active and led a very busy life

Then two years ago I had a bad fall and tore my PCL

After that all hell broke loose

Everything came to a screeching halt

Trying to get back

I’m glad I FOUND YOU ALL.

Even though you don’t live close

You are all such good people

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Do you think your knee injury caused emotional stress?

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kkminton. ..interesting you had a fall too...I too was a 'atopic' child and as an adult I still get rashes, I hate all smelly stuff..perfume, household cleaners etc.

I also have friend who had a particularly nasty fall whilst doing sport, never recovered from it and now has RA.

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Definitely stress for me although I only sat back and assessed the whole situation recently.,raising a one year old and grieving a loss at the same time takes its toll no matter how tough you are physically

I have had so many fun times on the way.

This one would get me in trouble had I been in the 🇬🇧

When my daughter was about two something happened and the housekeeper did not show. Car booked into local dealer,I was running late, I dropped the car off left the keys jumped onto a small plane as a 15 minute flight to where I needed to be. When the plane landed phone was ringing like mad. Receptionist from the garage said don’t worry sir your daughter is safe playing with the staff. Shit the penny dropped as she was fast asleep in the baby 💺 when I left the car I forgot her.

No one gave me a manual on how to raise a child, at least her manners are impeccable and everyone loves her personality.and she has the confidence to speak to people.

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Holy shit! Bless you both!

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What an interesting thread Shalf, thank you for thinking of it!

Will answer early tomorrow morning as I'm just off to San Francisco.

Quick handful of painkillers!

Mx

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Have a lovely time :)

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I was 14 and I had flu.

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Interesting Ruth as I used to complain at 18 of painful joints, my only relief was to soak them in hot water. GP said don’t be silly only pregnant women suffer this. My present GP found this years later in my notes. Was that a warning 25 years ago I wonder

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So young! Poor you! Yes, Flu seems to be a strong factor.

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No history in my family as far as we know (WWII did in for a lot of them). Interestingly despite no family history both of my sisters have developed different auto-immune disease, so there is something about our genetic make-up. And although I had a super stressed job, plus stressful lifestyle at that point, who doesn't these days? So I put mine down to dodgy gene tics, smoking and crappy lifestyle.

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Definitely think AI diseases run in Families...not necessarily RA, but there is a thread.

Maternal grandmother chronic Asthma...her daughters seemed healthy enough, but.....

Female Cousins,1. Asthma(now RA& Osteoporosis) 2. Exzema& Asthma (had RA developed Parkinson's & died soon after) ) 3.Me Hay fever.....now RA.

Male cousins, 1.brain tumour, (died in his mid 5o's ) 2.prostate cancer (doing OK) 3. MND...died 3 months after diagnosis. 4.RA.

I seem to have been the luckiest, if you could ever call having RA lucky? But it would be curious if the AI's above were just a coincidence.....but I guess we'll never know.

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Something in my genes .... although its not hereditary, I think my genes predisposed me to getting an auto immune disease. Looking back, my bloodline ancestors had various other auto immune diseases. I was 6 years old, it wasn't stress, alcohol or cigarettes! I lived on a farm, plenty of fresh air, exercise, green space, fresh veg etc.

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Yes, I read it is something in your genes which predisposes you to the disease - then it lies dormant until a trigger sets it off - in my case, stress when having a lot of work done in my house (I am a bit obsessive compulsive and hate disorder and people in and out of my home) and that was followed by my son's wedding which I got very anxious about as don't cope with social occasions very well. So all in all, a predisposition to it and stress as a trigger. And we are pretty sure my grandmother had it too, tho no-one left to confirm it now. :(

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Very interesting, thanks for sharing. I understand your points, I'm very similar.

Suzie x

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My mother had it and I think it was dormant in me. My husband died, I moved house and I think it was triggered similarly to you. I was doing some necessary drainage work at the new place and had opposition from my near neighbours especially one who made my life a misery, reporting me to planning enforcement etc etc. It was a nightmare and I had to deal with it on my own. Bingo, after a few months various joints started, the rest is history!

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Jeez downtime! That's awful. Did these neighbours know you had lost your husband? Some people seem to love causing trouble! Hope you got your drainage sorted and stuck by your guns!

Sounds like genetics and stress were factors in your situation.

Hope your doing better

Suzie x

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Yes I think so too. Everything was sorted but even now my closest neighbour and I don’t speak! She knew the situation but obviously didn’t care . A strange woman. Her husband has now left , no surprise, and even though I feel sorry for her I still can’t be friendly . I must try to be a better person........lol

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Well that's understandable. Perhaps if she had the courage and decency to apologize then the air could be cleared between you both. Some people are too stubborn. It gets them stuck in mud like a donkey haha x

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I stubbed my toe. A really bad whack - it turned completely black and triggered my arthritis. I have psoriatic arthritis - autoimmune again.

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Ouch!

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Hi, mine all started this year, in March, sore feet, swollen knuckles and knee soon after. I look back and yes work was stressful. I had no recollection of a infection, but I have tested positive on and off for menopause..... Seems I've been on the cusp of menopause for a couple of years, but not quite... So agon not sure really... With the meds everything apart from sore knee has settled at mo!

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Hi, that's very recent. Glad to read things have settled with the meds and hope you are also getting relief from the supportive people on here. We all understand and that is something we all appreciate.

Take care

Suzie x

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No-one in my family has this condition or anything similar. I had one traumatic event after another, in the space of just four years my world had been ripped apart. I was already suffering with PTSD & then I had an accident, was rushed to hospital with corda equina. Then RD, reckon it was stress/trauma. Unfortunately life has taken a dip yet again & I'm flaring badly 😞

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Aww Caza, this is so sad to read :(. Are you receiving support and care? You have been through the mill. Feel for you. So glad you are on here with us at this awful time. We care.

Please stay in touch

Suzie x

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That’s very sweet of you. Thank u x

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I had a very stressful time for about 3 years at work and retired as a nurse at aged 68. Had a lovely but busy 4 month holiday with family and travel in UK and came back to NZ and picked up an odd debilitating virus a bit like the flu. Developed PMR and then diagnosed as zero negative rheumatoid. At present in hospital having passed a kidney stone and now have kidney infection. Improved with pain relief and IV antibiotics

I’m sure stress is a factor

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Hi Janicep I think so too!

Get well soon!

Suzie x

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Thankyou to everyone for sharing your personal stories. Very interesting. I wonder now if there are any connections to the type of autoimmune disease each of us have and what we believe triggered it. For example, I have seropostive RA. I believe the trigger was stress. But could have been a combination of other past things - many operations and smoking.

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I’m a bit late to this.

There no AI disease in my family. However, I was a smoker and did suffer a traumatic event in 2002, and developed PTSD. I quit smoking in 2017, and was diagnosed with double positive RA in Jan 2018. I did some research, and there’s a link between PTSD and AI illnesses. It’s also common for women to be diagnosed with RA after childbirth, so I do feel there’s some sort of “trauma” linkage - be that physical or mental.

I believe that my trigger was the stress related event, plus I smoked (my bad ), cheers :)

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I suffered a major family trauma (the sort of thing that you'd only expect to see on TV 😕) then came down with a flu like virus that wiped me out for a couple of weeks and within 6 months the joint pain started.

A really interesting discussion, I'd never broken down events before and related them to the RA but it does appear that emotional stress may be a trigger

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Hi, it appears that stress and flu rank highly as culprits of autoimmune diseases. Thanks for sharing your personal story and yes, it certainly makes us think!

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Mine is hereditary, I remember my aunt having very deformed hands and eventually being in a wheelchair. It seems to run in the female side only and hence neither myself or my sister have had children for fear of passing it on.

My trigger was a very bad case of gastroenteritis when I was 27 and it's been downhill ever since.

I was quite lucky because my GP at the time was a rheumatoid specialist and when I asked him about my swollen finger he sent me straight to rheumatology for tests, so diagnosed very quickly.

Good news is, I'm 35 years post diagnosis and still getting on with life even with all the replacement bits I've got. Thank goodness for the nhs.

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Very touching story. Lovely to read you are getting on with life after a lot of years - good for you!

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Hi Everyone, I was having a good life, retired and learning Ballroom and Latin dancing ,walking and having great foreign holidays. I tripped on a kerb in the car park where I Lived. I put my Hands and arms out to stop me from crashing on to the bonnets of parked Cars. Then slid down face first between two cars. I knocked two front teeth out , broke my collar bone and damaged my right ankle. One week later my fingers and wrists swelled up. It was down hill all the way since then.

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lucymead similar story to myself. I'm sero negative RA.

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Oh my word! This is a sad story. So sorry. Could cry for you :(

Suzie x

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😮

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Thinking of you

Keep in touch

Suzie x

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Thirty three years ago 5 weeks after a hysterectomy I woke up unable to move with swollen joints and terrible pain, dx with lupus and then RA. Ten years earlier I got German measles for the second time, had it as a child and after that my thyroid started to fail, I was dx with Hashimoto's. No one in the family we could trace with any auto immune disease. X

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My word Gigi! This must be tough for you! How on earth have you managed?

I have never heard of Hashimoto's. But Lupus followed by RA! Ouch! Poor you. I recall my mum after a hysterectomy. She was quite unwell for a good while. I hope you are receiving the best possible care and attention.

Feel for you

Suzie x

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Thank you Susie. I have a very optimistic view of life and what it throws you. Hasimoto's is the auto immune condition of under active thyroid. I should add I had measles as a 5 year old and developed constant ear problems till I was 16 and had a mastoid op. I was treated with antibiotics every 3 months or so and have always thought there was a connection as they compromise your immune system. Both my parents who I adored died young with cancer and my sister has been my rock. My ex husband couldn't deal with my lupus/ RA and left. I eventually retrained and got a job in Insurance Brokers once the family house was sold I got a mortgage and bought a house for myself and two teenage sons. We are a close family I have 5 grandchildren. They are the love of my life. There have been good times and hard times. My health remains a problem, we always laugh if it's going I'll get it. You realise on this forum you are certainly not unique. You also have a lot to deal with so take extra care. X

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You sound a very strong person Gigi and you will inspire lots of people with your reply. It's not the first time I have heard ex partners/spouses leaving due to their inability to deal with the illnesses. I am very patient and a good listener and try to see things from everyone's point of view but struggle with this kind of situation. The vows of marriage - through sickness and in health! Well, it's lovely you have been blessed with grandchildren that you evidently adore and a sister who sounds like an angel. Life's twists and turns eh!

Keep smiling! X. PS - Thankyou for explaining Hashimoto's, it's a new one on me.

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Hi Gigi, your story is interesting. I believe that Hashi's thyroiditis is inherited. My daughter in law has it & eventually discovered that her mother also has it, though her mother keeps it a secret!

German Measles, I had that 2 years running, which seemed to trigger my uveitis, also an autoimmune disease. I have since done a lot of research into my various eye conditions, plus a Derm condition & Sjögren's Syndrome & the one condition that keeps re-appearing, is EBV - Epstein Barr Virus. I had this at 18, I also had chicken pox as a baby & shingles at 12.

One of my Ophthalmologists put me on Aciclovir tablets for life & my eye condition didn't flare so frequently. Subsequently, another Ophth took me off them - about 8 years later. I have now developed several other autoimmune diseases & yes, stress does trigger them now.

You have done really well & I congratulate you!

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Thx OMH. I was in my early thirties when I got hashi and my mother and her elder sister were still alive then, they couldn't recollect anyone on their side of the family with it. My fathers sister was also alive and again didn't recollect any one with it. The two aunts alive when I got lupus/ RA, again no one. Doesn't of course mean there wasn't anyone but they certainly didn't know. Both my sister and I have glaucoma as did my maternal aunt. I believe mtx caused my dry eyes dx 2 years ago. A nightmare last year when a cataract op on my right eye failed, the left eye 3 months earlier was a success. I couldn't see in that eye for two months until they could attempt another op, backwards and forwards to the hospital to get the pressure down including optical water tabs they made me very ill. The second attempt were they put the lens in the back of the eye was a success. Still have drops 4 times a day to keep the pressure down. I've also had shingles in my forties, causing my GP at the time to say if I lived in a remote cabin in the Canadian outback a wolf would bite me. !!! You seem to have had more than your fair share of problems too. Not to sure what EBV is so will look it up. It doesn't sound good though. I currently have a leg ulcer, I have a good team looking after me and with compression is almost healed. Please take lots of care. X

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EBV - glandular fever!

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Thank you, that's just awful, many years ago my brother in law had it, he was so ill for months. He seems to suffer with tiredness, aches and pains these last few years, but nothing ever shows up. Could he still have problems these days. Your the brave one, so much to put up with. All the very best. X

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He could have problems because once it is in your system, it can show up again in one way or another at any time. I was diagnosed, finally, with Sjögren's Syndrome in January & with all that I read, I saw that EBV might be connected with that too. Apart from the dry mucous membranes - eyes, mouth, it can cause joint pains etc.. I don't believe that I am brave but thank you x

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Thank you for replying. I am seeing them tomorrow so will have a chat with them just in case this could be the reason. He drives my sister mad. He has been to the doctors many times and had blood tests etc, they always come back clear. I have in the past suggested he has his b12 Vit D folate and ferrous levels because I have have prescription meds for these. His are all within normal range. He has recently come out in a nasty rash, strangely won't go to the GP for this. Who knows. We love him though. It's easier to deal with when you have a name for for what's wrong with you. X

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Good luck & I hope it helps, even if it only gives them a direction in which to look. x

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Shalf what an interesting thread. Thank you for posting.

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It is indeed Mmrr. My personal experience with my diagnosis was basically " deal with it" or that's how it felt. No GP or rheumatology team ever asked me or gave me the time to express my feelings and/or discuss how on earth I got RA ! Until I became a member on here I felt very isolated and vulnerable. Even now ( the outside world) feels lonely to me because no one really understands this disease to want to talk about it. ( Some don't even want to understand) The sad truth!

I thank you all for being here

Much love and appreciation

Suzie x

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((hugs)) M x

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Absolutely, I talk little about my situation now. Apart from my partner who is very supportive, I feel others see me as a 'moan' .

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Oh your not on your own there! X

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Bless you xxbig hugs x

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Unfortunately it's like a lot of serious diseases.....nobody knows FOR CERTAIN.

If only research could answer that question maybe some of us would stand a chance of a cure.

When I was diagnosed I was newly retired, playing tennis every day & generally leading a very active, enjoyable life!

So RA was not exactly what I expected when I saw my GP with what I thought was tennis elbow!

One of the first things the first rheumatologist I saw asked me, was if I'd had Hayfever as a child ...I had...Hesaid "right that figures"!

So sore throat streaming eyes,& a runny nose were apparently the first signs of my AI disease journey!

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It comes as a huge shock, no doubt about that. Especially when we have been very active. I was the same, enjoyed playing tennis, hiking and walking with my collies in nature. Loved that life and want it back. I'm no TV person.

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After 20 years I still think about playing tennis! But my ankles & wrists will not cooperate!

I can only be thankful most of my joints are holding up & I hat have no serious organ involvement.

I try to manage to travel as much as possible, but this year I have had a flooded house, with all the after effects,& a mega horrid rash that entailed lots of doctors visits, so I have only made one overseas trip.

Hoping to get away soon...but with the temps in Europe I think I'll wait a while.

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Hope you can travel again soon AC x

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Hi there, no medical input but I do believe it was around 8 months after having a hysterectomy in 1993 when I was 31, after which I developed a really nasty infection. I do also have asthma (another auto immune disease). It has been particularly aggressive and the more sophisticated drugs I don't tolerate.

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Hi, young age to have hysterectomy. That's the worse thing about operations is the potential for infections. So sorry you went through that and that you are not tolerating some of the drugs. Are you on a dmard?

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I am. I am on a cocktail of drugs, methotrexate maximum dose weekly, hydroxychloroquine and sulphasalazine it's just the anti TNF and other BIOLOGIC drugs I can't take due to such horrendously awful side effects.

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That's exactly the combo I took in the beginning. Hope they are treating you well x

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They are looking after me well, I really can't complain. I think they have exhausted all available treatments and have changed drugs many times over the years. At the moment this is the combination that allows me to get through although some days in a loot of pain.

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I believe mine started after an injury to my left knee when I was 18 and diagnosed at 19 (32 years ago) and for many years it stayed in that knee but it is everywhere now. I don't believe there is any family history. After losing my OH (at 50 yrs) in September leaving me with two teenage children and a farm to manage I was expecting a major flare but everything crossed as much as possible as yet things are still settled and long may that continue.

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Goodness alone knows. No family history. A sickly child with a congenital abnormality to which I lost chunks of my childhood. Hayfever followed on puberty, episodes of painful wrists from 24, bloods showed rh factor mid 40s, asthma dx shortly after, divorce and too many house moves late 50s. Finally happy and settled a series of chest infections I didn't seem to recover from lead to painful wrists and hands and dx with RA November 2016. Just lucky I suppose.

J

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Hi Gnarli , I am glad to read you are happy and settled now. Some journeys for us. We should write a book! What do you think? " The journeys of Autoimmune sufferers" A best seller maybe and certainly insightful. :)

X

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Well, I was happy until this hit. But I'm grateful it didn't really affect me until now. The book idea would be useful for researchers, perhaps, but maybe a bit of a misery memoir?

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Yes, maybe add ' and the laughs too' as I have read some funny stories on this forum not so much this particular thread. No one can tell it like the sufferers themselves. x

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At least your sense of humour is intact...I think that is vital with all AI diseases, let's face it......No one knows 100% what is wrong with most of us.....so taking a laid back attitude can only help.......worrying to put a name to our aches & pains gets us nowhere!

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Very true! You share valuable wisdom on here :)

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Ok I'm a carer for my husband he has poorly controlled epilepsy and hit an awful time where we had a six month period of 30 seizures a day. It all took it toll on both of us. I started having problems with frozen shoulder so loads of steroid jabs over 3 years and eventually big swelling of wrists and hands... misdiagnosed carpal tunnel eventually got to rheumatology and diagnosed with RA at 48. My granny had RA and one of my cousins and then me! M x

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Wow Marie, you have a lot to deal with. Credit to you! It started in my shoulder too around 5 years ago. I was also misdiagnosed. Frozen shoulder, Rotator cuff tear, bursitis. Had physio and steroid injections. They didn't test me for RA which orthopedic consultant apologized for. Later my right hand became excruciatingly painful. Forefinger swelled up like a fat sausage! Deteriorated from there. On Baracitinib now. Was going well initially but have had a few flares. Seeing Rheumy next month.

Remember to also take care of yourself. Suzie x

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My daughter developed RA three years ago at age 19. I developed RA last year at 55. I’m told that my paternal grandmother suffered terribly from RA which developed sometime in her 50s So, in our case, I believe that genetics are certainly a factor. I blame menopause and stress as the triggers while my daughter blames the birth control pill so perhaps hormonal changes triggered our disease. We’re both RH and anti-CCP positive.

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Hi Shalifax, sounds like it is genetics in your case and I equally blame menopause and stress as my triggers too. x

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I wonder about so many things that could be causes in my life. My mother was always in pain with her back and she also had many nervous breakdowns which made me a nervy child having to see her sit crying day after day etc. On my father's side, there is a strong history of auto-immune diseases such as asthma, migraines, hay fever, eczema and psoriasis (all of which I suffer with). My father, grandfather and one aunt had really bad psoriasis and were virtually covered in it at times.

Up until I was nearly seven we lived in a busy town centre in a very old house that was quite damp but apart from having eczema, I was healthy and happy and loved playing with all the children out at the front of the houses (we didn't have a garden). Then we moved out to the country to a new house with a big garden and a field at the back of it to play in. Within the first year of living there, I had measles, chickenpox and mumps one after the other and from them on I don't think I ever felt healthy again. Where as before I could run about like the other children, I then was the one that couldn't keep up and was always at the back with my legs aching and not wanting to move fast. I remember that when I was eight my ankles used to crack and crunch which I moved my feet and that by the time I was about twelve, my knees used to lock up. We had an awful doctor where we lived then and he used to tell my mother that there was nothing wrong with me and that I was doing it to avoid going to school. A stupid suggestion when I did well at school and was always in an A-stream.

I coped with pain up until 2002 when it started to get so much worse. My mother had died very unexpectedly at the end of 2001 after what was a difficult year for us anyway. My son had been unhappy at school and I had taken him out to home-educate him, which although worked really well, was very tiring for me. I then had depression (for the first time in my life) which took quite a long time to get over. Since then the pain has got worse and worse to the extent that I can now do very little and am in a wheelchair. I often wonder if my son will end up like me and sincerely hope that he doesn't, but after a hit and run accident twelve years ago, he now suffers from back ache a lot of the time and he also has clicking knees and ankles.

Sorry for the long post and make of it what you will, but I wonder if all of the things I have written about have added up to cause all this.

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Hi holly-willow, you sound like you were a happy child until these unfortunate illness's struck you. That's a shame about your doctor. How insensitive he sounds. Stressful times! Wishing you and your son to get better.

Suzie x

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Thank you for your kind words Shalf. xxx

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Severe stress for tens of years with the final straw being an advanced cancer diagnosis for my Mum and her virtual total dependence on me. She also had had RD for 30 years before she passed away in 2016 so I was pre disposed to RD. I had read it was hereditary but tbought it skipped a generation, alas no...

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Hi Misty dawn - Sounds exhausting! No wonder the stress! I have a similar situation with my mum. It's very hard when your not well either. I'm sure your mum did and always wil love and appreciate you for your care.

Alot for you to deal with

Take care

Suzie x

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Thank you Suzie. Look after yourself too. Strangely, the words of my Mum’s consultant still echo in my ears. She said “you need to back off or else you will make you make yourself ill. I (consultant) can see how dependent she is on you but she will manage”. I just did not know how to ‘back off’ and lo and behold, RD struck...

Usha xx

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Your reply mirrors me Usha. On the day I was officially diagnosed, I went also to the memory clinic with my mum in the afternoon. Oddly, she received her news same day as me!

My mum and I were told ( on that afternoon) that she was in the early stages of dementia. I told her doctor that I had not long been informed I have RA. He could not believe I was still willing to come to her appointment and support her. It is hard and I am guilty of giving/helping with no boundaries. It does take its toll.

Suzie x

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High stress - Major job with lots of hours in SF (live in VA.), then left that to come home and took a job in Richmond I hated with a really broken company, then mother in law fell and I needed to clean out her house, sell everything, get her into assisted living, all at the same time that my hubby got prostate cancer. First was the RA, then Sjogrens (which I had actually had probably since 92...). So, I would say all stress...

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Definitely believe stress with me too! I felt my body was going to explode at times. Sorry to read of your husband's ill health too.

Take care

Suzie x

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Thanks for the nice words Suzie - He actually had prostate surgery (after 9 years) three weeks ago and just went back to work this morning, so I am relieved. I wasn't sure he would ever had the surgery...

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Wow - brave man!

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I had chest infection and cold was really quite ill, not long after pains started in right knee, then progressed.

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Hi Nairny, No one could ever expect such things to occur after infections. So scary! I have had my fair share of infections through the years too. Wishing you well

Suzie x

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Hi all, I am Renee and I am fairly new to this group. I have never added my two cents to any post but couldn't resist this thread. My story is similar to most, I had a 1yr old toddler, was working a stressful job, going to school and then had the flu which progessed to pneumonia. A few months after my bout with pneumonia in 2015, I had excruciating pain in my wrist which persisted for months and progressed to my R hip. I was dx in 2016 with RA.

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Hi Renee, don't worry if you haven't posted before. I am so pleased that people are opening up because to express is to release tension/ feelings and that can only do good especially to people who truly understand. Like probably the majority of us, we think and do things like we are superwoman/man ! ' pace yourself' I used to hear. 'No time for pacing' I would reply. Wish I had listened to the advice. I overdone things and built up a high level of stress. I hope your meds have been successful and your not suffering so much pain.

Take care

Suzie x

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I put mine down to hereditary reasons. It's in my family. Although my diagnosis was 3 years after my son was born. I certainly wasn't suffering from stress. He was my youngest child. I'd had rheumatics as a child which mum kept saying it was growing pains. I think I might have had undiagnosed JIA which wasn't known of in the 1950s. Diagnosis was in 1987.

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Oh Poemsgalore, you have lived with it for a long time. Any tips on how you manage and have coped through the years? That must have been tough as a child. Thanks for sharing

Suzie x

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I remeber being taken to the coast as a 5 year old and insisting on mum hiring a push chair for me, as I just didn't want to walk. Mum just said I was lazy, but I got my way. I was sent dance lessons from a young age as I was very bandy legged and m then GP told mum I needed leg irons. She didn't want me strapped into those huge metal and leather things (1950s style callipers). So tap, ballet and later ballroom dancing were the order of the day. Can't dance a step now. :-o

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Ahh good for you :) - I would love to have done ballet. x

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I had a cold which turned into a chest infection. Had a cough which persisted for weeks then woke up one morning unable to turn my head at all and lots of painful joints. X

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Hi Happygranny ( what a lovely title) Unbelievable isn't it. Did this occur recently or some time ago?

Suzie x

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December 2013, lots of physio and acupuncture followed. Initially reactive arthritis then finally diagnosed as RD 2016.

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Out of the blue a very stressful year, then the following summer, pneumonia, antibiotics. Then in the autumn UTI with more antibiotics,cut my hand which swelled up so given more antibiotics and then when the other hand swelled up too and feet became painful to walk realised something strange was happening which turned out to be RA. No history in my family.

There seems to be a stress theme developing in your answers Shalf !

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Aww Rosey , stress is frequently getting mentioned. It's such a shame some of us aren't getting relief from the drugs. That just breeds stress! I am on a fairly new drug for RA - Baracitinib. Great first few weeks. I praised it! Now I feel like it's doing nothing. Swollen joints and very painful wrist. Back to square one!

Sorry to read you had pneumonia.

Hope things have settled for you.

Suzie x

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I too was experiencing extreme stress for many years prior to my RA diagnosis. Which lead to extreme fatigue and bouts of depression. Stress I believe contributed to my run down immune system.

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Can relate to this. Hope your managing well

Suzie x

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I was going through a divorce ( which I wanted ). My husband had mental health issues and was alcohol dependent. I had 2 going children at the time and I remember gardening and thinking " I feel I'm getting ill. " I also had this weird sensation in my chest as if an elastic band was being pulled either side of my body. Soon after this I was standing at the sink on a Saturday morning and felt a "tiny plug" at the back of each heal release and fluid swirl into the toes of each foot. Within an hour i could barely walk. I was 38. Im 65 now and have been blessed with remisions - flu has actually given me 2. The 1st time it was 2 years after the 1st symptoms and as I was lying down feeling awful within 1 hour all my symptoms drained away ( for 3 wonderful years).

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Hi Kalimer, that must have been a tough time but fabulous re the remissions! :)

Suzie x

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So I’ve not wrote any posts in a while as I’ve been in a very dark place emotionally & physically but often come on & read how your all getting on.

For my my RA started with a stiff neck. I just woke up one day & thought I’d slept funny or over done something. Anyway the stiff neck got worse & worse & the drs did X-rays & gave me codeine saying it was wear & tear.

I put up with the stiff neck for 2 years, I couldn’t turn my head & the pain was unbearable. Then I went on holiday with a friend & my little toe started hurting. By the time we got back weeks later it was all my toes on one foot.

By the time I got a drs appointment it was my shoulder too. So finally after much nagging I got my bloods done & they were through the roof. I was given steroid injection & a prescription for anti inflammatories & referred to a rheumatologist where the same day they hospitalised me.

Long story short I was put on methotrexate & bulimics (5 of which did nothing). I’ve had a c1-c2 fusion & am waiting for c5-c6.

I had no stress or dental problems. Life’s a bitch sometimes! X

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Hiya Donna Louise, thanks for sharing. I had a c5-c6 fusion done in February. It was a success as far as the operation went to relieve compression of nerves I had been suffering in my neck , down my arm and into hand for years! Nerve pain feels better however my shoulder ( same side) and wrist/hand is very painful and stiff last few days with RA flare-up! Also my knees/hips. I have had so many different medical problems that it becomes difficult to know what's causing what sometimes! Our bodies are in crisis with the RA for sure. If it's any consolation, I was also told it was wear and tear and in hindsight, wore that for too long. I've also been emotionally in a dark place many times. I understand. Keep in touch DonnaLouise and take care.

Suzie x

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Thanks Suzie, & I intend to post more often again. It helped me a lot before 😘

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Stress stress stress no one in my family had it but since I was 10 things happened in my life right up to 63 and now I have the terrible disease I suppose I worry over anything family etc so I do think in my case stress 😞

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Hi Elswick, I believe it was stress too that struck the final chord. My body had gone through several operations under GA and I wasn't very good at pacing myself. No choice where that's concerned now! Also went into fairly early menopause. Had frequent UTI'S and wasn't producing sufficient cortisol which resulted in fainting episodes outdoors. Was hospitalised and given a possible Addison's disease diagnosis. That increased my stress levels dramatically! Seropostive RA and Fibromyalgia is what I am trying to cope with now. Thankfully, following many tests, it's not Addison's disease. Endocrine Consultant said it was very likely due to the volume of steroids into my shoulder. I am also allergic to morphine, codeine and family of those type drugs. Causes Urticaria.

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My symptoms started Oct/Nov last year , was diagnosed with Vit D deficiency took high dose of that and started to feel better, then in the new year had pain in my toe, put this down to walking too much on holiday with uggs on. Just progressed from there and kept going back to the docs trying to find out what was wrong with me. Finally, recently had the diagnosis...just waiting to get some meds ....Rhemy wanted to see how I would get on with a steroid injection ....only lasted a week and now feel worse than ever....roll on Friday for my next appointment. Anyway, prior to being diagnosed, I had a couple of years of stress ......we moved into our new house, then a few months later near Christmas, my dad died suddenly in Spain, I had to drive my mum back in their Motorhome. She moved in with my husband and I, no other option, which took its toll on our marriage. I didn't really have time to grieve, as trying to look after my mum. I had to deal with work, her, sorting out stuff for her, and all the household stuff - my hubbie works away most of the week. Have fallen out with my nasty sister, just cannot put up with any of her nastiness anymore, only so much one person can take! My mum moved out with my sister for a while, bought herself a new house which she needed help with, moved back in with us for a couple of months before moving to her house. My hubbies brother died suddenly at 49, so we had that to deal with too. Now, finally getting stuff to our house , new bathroom - suppliers were crap - more stress, now having the kitchen done. So yes, I would say I have had a lot of stress over the last few years which probably hasn't helped. Not sure about any hereditary link as yet.

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Hi Rubyroo, sounds very stressful. My mum is in early to mid stages of dementia and it's tough trying to care for loved one's when your feeling rubbish yourself. I have always put others needs before my own. It's in my nature to do that but it wears me down. I'm exhausted all the time with the Fibro causing burning muscles and chronic fatigue. I have two sisters who don't pull their weight with helping my mum. Sorry to read of your family losses. Life can be so hard sometimes.

Take care x

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It definitely can !!! Sorry to hear what you have to cope with, why it is that these things never seem to happen to the shite people ??? Still onwards and upwards..... keep smiling

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Good question! ;) X

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Dear Rubyroo1 - I totally understand your dilemma with your mother & sister. I have a similar situation. I get through it by setting up physical/emotional boundaries whenever possible. Stay strong!

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Hi Abbey road, I have the same family issues! How do you set up physical/emotional boundaries? I need some of that! Thank you

Suzie x

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Here are some examples that have worked for me. First, I set up blocks on social media. If someone is writing hateful comments about me, I don't want to see them. I have also created filters in my email so that I'm not bombarded with numerous emails from certain people. I set limits on when and how much I'll support certain family members. I set limits on how many loans I'll provide. These are just some examples that I've used to help me cope with a stressful family situation. I do care about my family; however, stress plays a huge role in chronic illness and I need to take care of myself. I hope things improve for you!

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Thanks Abbeyroad. Setting boundaries has never been my forte! But I have to now. Good advice.

X

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I had a traumatic time when my first husband became psychotic. At that time, I had a 2 year old and a new baby. He got ill while I was pregnant. A couple of years later had another baby with my new partner. Became very anxious.Twenty years of almost constant panic attacks, depression and agoraphobia followed. Then, menopause and I magically recovered! It was a fantastic! Suddenly I wasn't terrified all the time! So, I started to try and get myself together. Went on a diet, started exercising and got my long-neglected teeth mended. It was immediately after a lot of dental work that I got a weird swollen little finger. Turned out that was RA. So maybe it was the years of stress, but I personally think it was all the dental work.

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Hi aatatel, could have been a bit of both. I guess the human body can only take so much of trauma. There are people who have RA that haven't suffered stress. Hope there is more research and a cure no matter the cause. We cant turn back the clock - that's a fact. I find myself saying IF only......'If' is a small word with a big meaning. If it was stress that gave me RA , I would have tried harder to control the stress. Unfortunately, too late for that. Dental procedures appear to be many people's reasons for developing RA.

Take care x

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Noticing the link between dental work and RA onset, too. Starting to wonder if that was a trigger for me. Hmmm

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Hi there, interesting to hear thoughts on this. In hindsight I realise I was feeling ill and fatigued for many years and eventually it just came to a head and I had a huge flare up. At the time of the flare up I thought it was out the blue and then I learned more about the condition and realised it was going on for years. It's genetics that cause it.

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Hi Fatjoints

They say hindsight is a great thing! I tend to say that word and/or 'IF' only... but how can any of us have prevented this. I was angry with myself when I was told I had Rheumatoid factor in my blood. I always tried to practice my 7, Ps ! Seems no matter what you do or how healthy you live. If it's coming to bite you , it appears there's nothing to stop it. Did you visit your GP when you felt unwell and fatigued?

Thanks for sharing

Suzie x

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It was definitely stress and bullying in the work place. I remember feeling like crap my body was hurting all over. I thought I was coming down with the flu. And one of my work colleagues said to me. We don't carry people in this place. It was horrible.

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Awww gailyb, that's the attitude that we are up against. It is horrible - I agree with you. I also had a stressful job with many demands. Sometimes no matter what you do it's never enough! I treat ignorant people accordingly especially when they are aware of symptoms that autoimmune diseases brings! Always be kind to yourself and give those type of people no head room.

Take care

Suzie x

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Thank you, Shalf, for posing this question! I've enjoyed reading everyone's responses. I believe that my RA triggers were all of the following: childhood trauma, years of stress in a bad marriage, divorce, financial issues, having the RA factor, and maybe Epstein Barr virus? dental work?

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It's been very interesting and great to share with so many! :) X

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stress and getting builied for years

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Hi Annie , Oh no! Sorry you went through bullying!

Suzie x

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hey suzie thanks no problem x

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Hi, same here!!! Severe stress & menopausal. In fact doctor treated what he thought was the menopause first with HRT to rule it out....then, after no success, RA!

Told me, that as I was relatively ‘young’ (45) & had ‘caught’ it early, I stood a good chance of controlling it.

Stress still causes ‘flares’ with me!🙄 😊

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I thought my symptoms might have been peri-menopausal, I'm 44, but alas no, which means extra things to contend with when the menopause does kick in, oh the joy ! 😬🙄😁

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HRT? Took a wee while to get that right too but worked in the end.

Good luck X

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Hi Butterfly sue,

This story is very familiar! I was 45 too when I went into menopause! And have also had alot of stress. There has always been something niggling my mind about the relationship between RA and the menopause and HRT!

Suzie x

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Hi

My RA happened after a bout of shingles and stressful job.

I'm the only one in my family to have this condition and I have 9 siblings. That is why they don't understand it. It's the arthritis that's picked up and start saying they have it too. So I ask what medication are they taking and it's paracetamol or an anti inflammatory not methotrexate or sulphasalazine or Hydroxychloroquine. They don't understand there are 2 types of arthritis one is inflamatory and can affect more than one joint and the other wear tear. It's so frustrating when I feel tired and cannot meet at night.

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Hi Matilda, This is a common issue and I sympathise with you. I experienced the same with a few family members. ' It's just arthritis' - very frustrating! Many people on here use the letters RD ( Rheumatoid Disease) and I understand why! It's far from Wear and Tear as we all know. This is why I have so much gratitude for NRAS -HU and the members who take that feeling of being misunderstood away. The problem with the " outside of AI disease world" is that on occasions, our illness can't be seen therefore people think we are complaining for a little thing like ARTHRITIS! When my joints swell up and LOOK very sore, I want to show everyone and I have done that but it makes no difference to some people. It's terrible actually. Can be very isolating and upsetting. I hope, together, we can keep highlighting what RA is and how debilitating it can be.

Sorry to hear of your shingles. I've had it too, following a neck operation under G.A this year. Had to come off suppressant drugs a week before op! Chronic fatigue is a huge concern for me. Still having a battle with that.

Suzie x

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My story is a kind of a ‘it’s was your own fault’ one and kind of a funny story but now I deeply regret it! Anyway here goes!

In my old house I constantly had cars parking in front of my house and it drive me mad!!!! So anyway one night coming home from work in the dark a old punto car was parked in front of my house and a car was parked close on one end of his car so I decided to take out my frustration, be a cow and block him in! Served him right! So I got out and feeling smug walked between his car and my own and walked knee first into the ball tow bar thing on the back of his car. Hit me straight in the knee cap and I remember having a perfect round circular bruise for days! Served me right huh? And that’s what started it off. So my own fault. I’m always the kind of person who never does anything like that so I guess it was karma 🙁

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Hels1989, it's not your own fault ! If it hadn't been the tow bar it would have been some other bump/fall or whatever.....😟

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Hi Hels, I agree with Mmrr. I think when anything out of the norm happens, we look for reasons to justify whatever has occurred. I think that is especially true with illness's. I have a huge problem with tiredness and insomnia and I sometimes wonder if my mind just can't switch off! It feels like I'm constantly thinking, analysing, solving etc - forever active! I have thought of numerous reasons/circumstances that may have kicked off RA. I can speculate but will any of us ever get that true answer??

Suzie x

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My pain started about 15 years ago after a severe bout with shingles in 2005. In 2014 I went through a series of six different surgeries and I often wonder if they were a trigger or a result of the RA diagnosis. Then there was heavy duty stress taking care of my dying mother 24-7 for the last five years of her life. She died 2 years ago. Can we even begin to determine the cause?

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Hi Bonnie, I find what you say particularly interesting as I went through a succession of operations under GA over a two and half year period. My friend has always suspected that is what triggered my RA. I believe the cause is stress. I am so curious to know!! but realistically, I am well aware it's not that easy!

This thread has been brilliant though! It has let us all see that many people have similar reasons to the cause. This COULD assist researchers, who knows? It does make alot of people think back to what was going on on their lives. But on the other side of the coin, many people feel there wasn't a trigger. Some were diagnosed very young. Some say simply genetics. It's a tricky one. Wish I had the answer!

Suzie x

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Absolutley, and although I say a fall triggered my RD. When I do a bit of soul searching ...it started gradually, then suddenly....fits very well, in that I had been feeling a bit tired, maybe not quite the mountain goat I used to be, then fell...

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I’m never without stress so that may be a culprit as well. Feel like a guinea pig sometimes but if we can help others in the future so be it.

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I know it feels like that but you and no one else are guinea pigs. Research has to go on x

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To be honest, minehas been a long time now, I can't remember before the onset of my autoimmune disorder as I was diagnosed with hypothyroidism at about 23 months old. When I was 13/14 I was diagnosed with Juvenile RA, went into remission when I was 19, it then caused my infertility. I went down the route of egg donation and luckily this worked 1st time and my son is now 16 and just left school. The remission was waning before I got pregnant but I had a wonderful pregnancy and no RA pains at all. Then 4 months after I gave birth, wham, RA back with a vengeance, I'm 50 now and I've had a lot of ups and downs with this disease and plenty that comes with it. If it wasn't for the love and support of my family I don't know where I'd be 💖

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Hi Ginger46 , Absolutely brilliant re your son! You must have been over the moon! I am same age as you and it's been so sad that the one pregnancy I had I misscarried. That was many years ago now and another reason for my stress however, I often wonder if there is a connection with hormones as my cycles were always a dreaded part of the month! I was shocked to be told in my forties that I was in perimenopause! In a strange way I was relieved due to my hormonal imbalance! But RA came knocking soon after starting HRT. I feel like an Autoimmune forensic trying to uncover the cause but have spoke to my Rheumy about hormones and she said it could may well be related. Your family sound lovely and very supportive. Not everyone has that. Good on them!

Suzie Xx

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Oh Suzie, sorry meant to reply the other night, just been so busy mentally preparing for my PIP assessment today, awful but that's another story. I'm so sorry to hear about your miscarriage, I count my blessings I had my son and we did go for treatment again after but it wasn't to be, can't be too selfish. Mine all started with my underactive thyroid as a child, I was paraded in front of many doctors which I hated back then, now I sometimes feel nobody cares, I'm sure they do though 😀

Rebecca xx

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I think mine started when I got very ill with diverticulitis and required emergency life saving surgery. Partial colectomy. Then 6 months later a reversal of the colostomy, plus major losses in my life-dad, hubby, friends.

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Hi Nablur, Sorry to hear this. A lot to deal with. A very stressful time! Has this been fairly recent and how are you managing honey? Feel for you!

Suzie X

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Thanks Susie X. It all started 5 years ago. I just take things one day at a time. ❤️

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I had a similar situation too!

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I didn't even know I had RA until I had a life threatening infection/sepis that almost cost me my life. Afterwards RA came on like mad!

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I was septic too. Wow.

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Hi Trish, This must have been so difficult for you too. 6 years ago my sister had sepsis following an appendix infection. She is still struggling to come to terms with how ill she was and supports the ICU unit in many ways in thanks to her recovery. I have RA and it's always a worry for me too that family don't get it. I hope I'm here to see a cure too! This one thread is approaching 200 replies which is a considerable amount. I believe and try to encourage everyone to open up as Autoimmune Disease is one of those illness"s that is very misunderstood. I was personally devastated when I was given the news of my illness. I felt too young, too fit, too active, too healthy for this to happen. Very few truly understood how I felt. I could tell. Joining here has helped me immensely. I feel hopeful that the outlook isn't so bleak as I once thought. I feel less isolated and I feel more understood. I hope you also find this from being on here.

Wishing you all the very best.

Suzie xx

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I use to be a physical education teacher and always active too. Life has changed so much. My illness was very traumatic for me as well as others. Forever life changing and a constant struggle. I hide it well too. Thanks for the support! It is very much appreciated. Hope you are staying well also.

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I'm not too well at this time. Inflammation still uncontrolled and feeling very weak. Fatigue has been a problem for a few months but having difficulty with sleep. It's a daily struggle unfortunately for some of us. As long as I find the energy, I will keep battling on.

Thanks for sharing your story and take care x

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It sounds like most of us all had stress, major illnesses then life threatening infections. I am happy that i don't feel alone reading all these comments but sad we all have to deal with it all the time the rest of our lives. I personally hope I'm here to see a cure. I don't want my children to have to go through this.

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When I was diagnosed, I was asked if I could think of anything that had triggered it - a trauma? My whole life has been a trauma, was my immediate thought! I am, and always have been, what is referred to as a "workaholic" - unjustified I think, as, like many more, I am just a self-employed person trying to make provision for now and my retirement (which I thought would have been at 60, but thanks to the government I am already 63). Thinking back and reading replies here, I can see now that certain things have been part of the whole scenario: hypermobility, IBS, hay fever, teeth and jaw problems, recurring shoulder pain, sudden allergic reaction to nail gels. This combined with a mother who developed polymyalgia after the trauma of having the bones in her foot broken and reset. It seems that diagnosis is some way down the road from the initial problems, and I think GPs need to be trained in the relationships between conditions and where they might lead. It is obvious to me that the GP surgery and the Rheumatology Department need to speak earlier. Don't know what others think and how they saw their journey to diagnosis. I struggled to convince my GP that the pain I had in my hands and wrists, plus the complete loss of strength, was not going to be cured with Ibuprofen Gel! Eventually, she panicked, and a blood test showed for the first time the level of inflammation I had and then all hell was let loose - surely a blood test doesn't cost that much to the surgery, so why not months earlier? Once the blood test result was through, it was all systems go, however, so full marks there, and I was seen, diagnosed, treatment begun, all within 6 weeks. It gave me my life back and I was able to even contemplate the future.

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Hi JanetMaryBishop,

I agree with you! I have many GPS in my practice and felt forced to seek a second and third opinion as I was also receiving prescriptions for Voltarol and Ibuprofen gels/creams initially. It's another interesting subject but intuition/gut instinct shouldn't be ignored. I knew there was something more sinister going on than muscular aches and pains. I asked for a blood test and was told it wasn't necessary at that time. My shoulder ached and my right hand was painful. One GP suggested that the dogs are probably pulling on the lead. Hmm - very frustrating. In my case, it took too long to diagnose and in my opinion it's much harder to treat if not controlled early.

Hope things are moving in the right direction for you now.

Suzie x

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My shoulder hurts ALL THE TIME! I did not realize that was part of this.

Today I feel like I’m falling apart. Total nausea, can’t even walk my dog. So grateful for my family who stepped up. Can’t work, hurt, nauseous and the cast. I’m miserable.

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So sorry to read this Nablur. I have active inflammation too just now which is niggling away at my joints but it's not the worst I have felt with this disease. I have been totally immobile and floored with iit before and know how bad it CAN be. Great your family are able to help and walk the pup. If that becomes difficult, it may be worth thinking of getting a temporary dog walker. Finances with illness is another stress we don't need. Applying for pip is another option.

Rest up as much as possible. Sending love and thoughts your way.

Suzie xx

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For now things are fine, thanks.

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I'm sorry to read in another reply that you are not too good at the moment. Fatigue is the most debilitating thing, whether mental or physical - and no-one understands that. People say in greeting "how are you? I say in return "do you really want to know?" with a smile on my face of course, because it isn't their fault! If you had a good day, it really is a good day, but in effect it is just better than yesterday ... All best, Janet

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Very true Janet. Yes, I am not the best at the moment. I'm on 8th week of the fairly new drug - Baracitinib. One 4mg tablet daily. My Rheumatologist is aware that inflammation is still uncontrolled and has asked me to give it another four weeks or so. The fatigue is depressing, it really is. I'm just not the type of person to lie around all day. I'm in good hands at the Western and hopefully everything will improve. X

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They really don’t want to know.

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Mine came on after a stressful event, and I had had several years of stress prior. Illness also causes flares. As I look back I've had mild symptoms for probably almost 30 years, but never thought much of it. I'd get pain and think I'd injured myself at first. Over time when it happened I realized there was no injury, just pain I couldn't explain. It didn't interfere with my life so I paid it no mind. That is how this started after the stress I spoke of. Exactly like I'd always had but became excruciating in my little finger a day after it had started in my thumb. I do want to mention I recently found out I was Vitamin D defecient. I started supplements (prescription) and think it might help. I did some research and discovered low vitamin D is an inflammation culprit. I looked at some forums and read some amazing stuff about benefits after taking prescription supplements. Just something I've been thinking about. My GP has instructed me to go on a very restrictive diet for high blood sugar and cholesterol. At the very low end of high. And gave me vitamin D. I told her my joint symptoms had progressed and asked about any testing because my blood work was normal. She said she didn't want to repeat same test too soon, and oddly said when I came back in 3 months joint pain might be gone. Appointment was too short for me ask why, but seems as if she meant because of diet and vitamin supplement. My symptoms began recently in May or June. Don't know, but thought I'd throw it out there. Wondering if anyone else has low vitamin D?

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Hi lovemydoggy ( Great name - love dogs too )

I guess the majority of people get pain through the years and like you, don't think about it too much and get on with things as we do but yes, I had stress over a long period of time. Infact I put the achey body down to stress but also got the unusual swelling and pain in finger and shoulder but that was incorrectly diagnosed as a frozen shoulder so time delay in getting treatment. As for Vitamin D, I haven't taken them and as far as I am aware I am not deficient of it. ( Today I am because it's miserable out there!) but I am interested in anyone's thoughts on it. How are you getting along with the restrictive diet?

Suzie x

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Just read your reply. Diet is tough, but haven't cheated much . I think she went a bit overboard with it, but suppose the idea is to get things back to normal levels asap to prevent serious problems down the road. I'm allowed no sugar, one peice of fruit a day, no potatoes,.no bread, nothing processed. She said once in a while I could have(was waiting for her to say a cheat day or something sweet or fried) a small bit of brown rice. I'm rarely speechless, but I was then. Leaving the office I kept going thru all the foods I couldn't have and thought "and my treat is brown rice". I've managed pretty well though and started to lose my taste for sugary thing and crave unsweetened Almond milk. That actually tastes like a treat now.l lost12 pounds so far far, and very happy about that. My digestive issues like heartburn, etc. disappeared. My symptoms are better overall, but still there. I can feel pain at the time of a stressor, and I have a lot. I should add I also get frequent acupuncture and that may be helping, or a combination of. Last time I went he hit a spot on my thumb that hurt so bad I thought I'd scream. I asked him what that point targeted. He told me it was for inflammation in the fingers. The fingers on my right hand are a major area of pain, but the needle went in the left thumb.

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There are a lot of replies here so I don't remember who posted it, but someone else mentioned vitamin D. No idea if there's a connection except low vitamin D seems associated with inflammation. Also found out that most people are vitamin D deficient but don't know it. The culprit typically is diet, not lack of sun exposure. That was a shocker. Oddly, it isn't a test they routinely give (as far as I know). At least in the US. My previous doc never tested me. A lot of people feel better after the supplements, but I seem to be more tired and weak. Probably no correlation, yet I was hoping for more energy. Fatigue is an ongoing problem for me.

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I remember having a really sore back and going to the Dr just before I went on holiday with my daughter-in-law and grandaughters. As we were driving along the motorway someone crashed into us side on, knocking us onto the hard shoulder. We got flung from side to side. On our holiday I was in pain continually, but thought it was my bad back, and struggled to hide the pain. But after we got home I was diagnosed with whiplash. But just after I went back to work and was feeling better, I started having problems with my hands, and tingling sensation in my face. But it took a year and a young Dr just out of uni to diagnose and send me for tests to confirm that I had RA. So yes I'll go with the Stress theory.

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Hi lifeboatann , oh my goodness what a terrifying experience on the motorway and with your family. The saying springs to mind! " You just never know what tomorrow will bring!" I hope and wish for only good for everyone! Glad you were able to holiday and not surprising you had whiplash with speeds on MW.

Understandable that stress would be the cause with you. I can relate to the 'waiting' too and delay with blood tests. It only makes stress worse! I hope things are better for you.

Suzie x

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Hi

Got diagnosed with RA just over a year ago. I was reluctant to put it down to stress. This bravado comes with being a bloke and thought I could shake it off.

I had been to a funeral and had, what I thought, was the mother of all hangovers. Only this hangover didn't go away. It turned into proper can't get out of bed flu. Then my knees swelled to the size of water melons I realised it was more than flu. GP had no idea, originally said it was a virus. I now know stress must have been a factor. I'm not a menopausal woman and had no family history of RA. I played sport , never smoked, ate well and didnt drink much (except at funerals) and it came as a bolt out of the blue, not just for me but for friends and family. So if anyone out there can provide the answer to the million dollar question, I'd love to know, why me?

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Hi FergDon, I think most of us have likely said - Why me? I know I have. I rightly or wrongly used to think Why me? because I was so healthy and fit. It could almost have inferred that it's only unfit people who get Autoimmune Diseases. Yes, I was rather naive in the beginning but I have learned a lot, predominantly on here. A lot of kindhearted and knowledgeable people on this forum. Sorry to read of your loss and yes, you must have been asking yourself what on earth you drank with the neverending hangover! Was the bereavement the first signs you ever had of stress? And was it a sudden onset of flu like symptoms and knee swelling? It's interesting as a lot of people ( including myself) were not diagnosed and/or treated for an AI Disease for a long time after complaints of pain, swelling and so on. How are things going now re treatment etc?

Suzie x

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Hi

Thanks for the kind response. The bereavement was not unexpected but still very sad. Previous to this I had been made redundant 3 times in 2 years. I thought I'd handled it quite well but it probably got to me worse than I thought. I'm not convinced the stress was bad enough to cause my RA or at least, it was something, sadly, common to a lot of men, which I never dealt with. Is there any research/evidence to link RA to stress? I imagine it's easier to come to terms with something if you have a clear reason for it happening. My treatment is going well. I read a lot of posts on here and realise that many are in a much worse situation than me. I try to be pragmatic. I swim regularly, don't drink much at all (not even at funerals!) as I feel like I'm hung-over most mornings now anyway, and have stopped eating wheat, which has made a difference. The thing I find most difficult is explaining to people and apologising for not being able to help. I couldn't help an elderly lady who was struggling with her bags off the train recently and could feel public rebuke at my perceived laziness! This is something I may write about on here as I'm sure many have been in similar situations.

All the best

Fergus

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Hi Fergus,

I agree wholeheartedly that it's easier to come to terms with Autoimmune Disease if you have a reason for it. That's how I feel, others may differ in how they see and cope with their illness.

I know NRAS provide very helpful and comprehensive information on RA which I trust. I personally don't know if there is any CLEAR evidence to link stress with RA. I am sure someone on this forum may be able to help further. It has been mentioned that RA in younger people is more likely to be related to genetics than in people who develop RA at a later stage in life. I think your experience with the elderly lady and her bags is a common problem for a lot of people. I also think it would be a brilliant subject to write about. It's no fun to be judged, I saw it many times in my line of work. I recall a man tripping up and swaying from side to side then eventually falling over. Some people automatically reported a drunk man being a nuisance in public. The man was actually diabetic and had no alcohol so it's difficult - I know. Being unable to assist someone is tough too. The frustration of most people with RA is that it gets frequently confused with Osteoarthritis. Maybe someone has an idea for the public that could highlight the difference? Great that you are making some lifestyle changes that are doing you well.

Look forward to reading your future post. :)

Take care x

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i was going on holiday so went to a tanning salon for a week or two before hand and when i came back off holiday i felt like id been in a car crash, i was also going through the menopause at the time, it never went away and i was in a bad way got pneumonia 2 lumps removed from my neck which were ok but showed up ANA's and from there i was sent to Rheumi who eventually diagnosed SLE (lupus)

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Hi Luisa,

Have heard this a lot! People on holiday, returning home and then pain develops. What's your own feelings to the cause of Lupus? Was the operation to remove lumps, the pneumonia and menopause all around same time? Sorry you have had such a hard time.

Suzie x

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Mine was triggered by doing so e strenuous back strengthening exercises at age 23 with mild back pain + morning stiffness.

At the time I thought it was acute and that it would go away. 15 years later cycling regularly for several months caused hip flareup ( this is well after I was diagnosed with spondylo arthritis) .

It is only now at age 38 that I am putting it together and noticing that the triggers were due to strenuous exercise.

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Hi Poff, is it RA that you have? Strangely at the back of my mind , I have kept mindful as to the amount of walking/hiking I have done over the years without enough rest in between. I remember coming home from a hike and my quad muscles were abnormally hard, worse than cramp or a spasm. They still ache walking nowhere! Been told that's Fibromyalgia. Unfortunately also have RA. Could may well have been strenuous exercise.

Thanks for sharing

Suzie x

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I think it was definitely stress-related! I lost my job in April 2009 due to a new boss doing a ‘clear out’. I took early retirement from supply teaching in December 2015 to look after my mum who had Alzheimer’s. I was diagnosed with coeliac disease in October 2016. Mum died in December 2016 and I found myself caring for a grief-stricken Dad. I was diagnosed with an overactive thyroid in August 2017 and in July 2018 I discovered I had my third autoimmune disease, rheumatoid arthritis. So yes, I think it might be stress!!

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Hi Twinkletoes, it sounds very much related to stress. So sorry to read of the loss of your mum. I am currently trying to juggle my own life with RA around helping my mum who has dementia. Dad died with cancer a few years ago. Life can be very trying on us at times.

Wishing you all the best.

Suzie x

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Hi , I developed mine in 2015 and earlier that year I was having treatment for a dental abscess that was caused by a small piece of file which had apparently broken off and remained in root canal when having root canal treatment about 15yrs previously. My theory is dental infection! The rheumatoid arthritis came on very quickly over the space of a month. I have never been stressed or got a family history of it.

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Hi Midwife, This is really interesting. There are quite a few reports of RA developing following dental procedures! It's something I wouldn't have considered the cause without feedback from other's re their personal experience with this disease.

Hope the management of symptoms is good.

Suzie x

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Looking back, I can see that I had been becoming more and more exhausetd for at least a couple of years, but my job was working with young people so it was necessary to summon up reserves so as not to let them down. I then went, with my wife, an a long weekend in France, walked round the bay, whinged about being tired, sat in one of those superloos for half an hour, got home, went to bed and in the morning my hands, feet and legs were severly swollen and my legs were covered in bruises. There was no position I could be in where it didn't hurt - unless you're in space then some part of you must touch something. Turned out to be RA which then turned into PsA, and here I am 8 years later and my disease is my friend. We work together. I've stopped fighting it. We face life as one.

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