New here - just diagnosed with psoriatic arthritis an... - NRAS

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New here - just diagnosed with psoriatic arthritis and fibromyalgia

SueDunn01
SueDunn01

Hi I have been reading this site for such a long time and today, whilst I relax on a sunbed in Greece, I read something that made me post.

I feel like I have lived with pain for such a long time. I have so much anger inside me! 10 years ago my periods became extremely painful. For 8 years, after countless scans and a week in hospital after coming in to A&E, and after years of people thinking I’m a drama queen, I saw a consultant who did a laparoscopy.

I had endometriosis that had blocked both my tubes both ends. Fibroids. Plus severe pelvic inflammation disease which the consultant told me had probably been there over a decade ‘and would have been considerably painful ‘ oh really!!!! I ended up with a full hysterectomy.

By this time I had already given up my career as a radiographer as I simply couldn’t spend all day on my feet. I was constantly exhausted.

After I assumed the aches and pains were the surgical menopause (I could only take so much oestrogen (I was 37) as my mother died of breast cancer which she had at 41).

A year later and I’m no better. Still not back at work. Marriage broke down and my daughter went to uni leaving me alone. I thought I was just depressed. I had been told the hysterectomy may not cure my pain or pelvic inflammatory disease and it didn’t. Now on top I felt more tired, my joints were so painful especially my knees (these were X-ray’d before the hysterectomy and I was told I had early onset osteoarthritis) but now my hands and my back.

Finally the go to me seriously enough to see a physio. He found inflammation down my back - he suspected a damaged femoral nerve and referred me to a back specialist/surgeon who I am still yet to see.

I saw a rheumatologist who did bloods and x-rays. Although my bloods were normal inflammation was found in my fingers, the furthest joints from the hand. My knees only need be looked at to see the inflammation.

The rheumatologist has diagnosed psoriatic arthritis and fibromyalgia but when I asked if the swelling that was in my back could still be a damaged nerve he just shrugged. He said only a small amount of inflammation was found in my fingers so I’m guessing the fibromyalgia diagnosis is because I shouldn’t be in as much pain as I am?

Since my hysterectomy I have had terrible stomach problems which I was firstly told was adhesions, as when I had my hysterectomy they found adhesions from my Caesarean and therefore I was in surgery quite some time whilst they separated my bowel from my stomach.

The rheumatologist wants me to start methotrexate but as I was just going on holiday preventing them doing a blood test two weeks after starting I have been told to wait till I come back. I know the drug quite well as my grandmother had rheumatoid arthritis from the age of 30 and ended up on methotrexate. I know how awful it can make you feel.

So my GP is now saying my stomach problems are due to IBS and that nothing else can be done about the pelvic pain/PID. Along with the psoriatic arthritis and fibromyalgia - my pain now just needs to be ‘managed ‘

I had given myself till December when my savings run out to get better and get back to work. This now feels impossible as it seems like I have come to the end of the line with everything.

I am not enjoying my life at all. I cannot enjoy food any more as anything I eat causes me to be ill, I’m constantly tired no matter how much I sleep, if I walk further than my back would like the pain brings me to the floor and my joints are constantly stiff and painful.

I don’t really have a support network. My mother was my support and she died in 2010. None of my friends seem to think I need support and most people I have told about my arthritis and fibromyalgia just don’t seem to (care? Understand? Want to support me?)

I was starting to feel like a complete failure and that I should be able to cope with this on my own. That was until I read a post earlier advising someone who had just been diagnosed to take it easy on themselves and look after themself. Actually made me cry as though that person was talking to me.

One of the things I don’t understand is that although I have pelvic inflammatory disease, this can make my belly swell 7 inches larger I have to have two different sized clothes and bras , Plus my knees which are clearly inflamed but yet my bloods come back with no inflammation how is this possible ? Does anyone think that the inflammation the physio found in my back could be the arthritis ? And again if he found inflammation why is this not showing in my bloods?

I’m also concerned as I have a friend who has RA, she started methotrexate four years ago and recently had heart failure due to problems with her lungs and they have taken her straight off methotrexate. I have been a heavy smoker on my life and I know that methotrexate can cause fibrosis of the lungs, this worries me

I was also reading talk on here of overmedicating and I am thinking if nothing is showing in my plants and the rheumatologist clearly thinks I shouldn’t be in as much pain as I am then maybe I should just try and cope without for as long as possible ? Especially as I already have the side-effects of a bad stomach and fatigue

I am so confuse yet I can’t seem to get anyone, my friends or my father who is my only family to even discuss this with me. They just dismiss it And say it’s up to you.

When I just had my pelvic pain at least it was two weeks out of every four and so I planned my life around it for 10 years. Now I just feel awful all the time. They also loaded me with codeine and tramadol to cope with the pain of my ‘painful periods’ before anyone bothered checking it out.

After my hysterectomy I wanted to come off the painkillers but obviously the new pains kicked in and I ended up being given patches - buprenorphine. Had I known how strong these were I never would’ve started them. I only found out as I went to the doctor to say I needed to have something for bad days yet there is nothing you can take on top of the patches (my stomach can no longer handle ibuprofen etc.). I said I wanted to go on something we care, of course the doctor agreed living that I wanted to reducce my pain control.

She told me the best thing to do was to convert to morphine and then drop me down of that - I had already dropped myself a third by taking the smaller of the two patches off four weeks before but yet to my horror she gave me 140mg of morphine slow release a day!!! Apparently this was equivalent to 45% of what I had been taking for 4 weeks!!! So I dropped a third then another 55% and she waved me off on holiday. It’s been like hell! All that morphine and I can feel my body in withdrawal plus the pain is agony.

I’m on holiday alone at the moment but my daughter joins me tomorrow and she has no idea I’m not well, she’s at university and I didn’t want to worry her however I don’t think I will be able to act for a whole week with how bad I am feeling

Sorry this post is all over the place it’s the first time I’ve got all this out in the open. I’m not even really sure what I am asking, so good luck to anyone who replies ! Although I would really appreciate any input or advice very much especially the inflammation not showing in my bloods?

Peace and love to everyone (meditation and yoga are the only things getting me through right now)

Sue

14 Replies
oldestnewest

Hi Sue, I’m sorry you’re feeling so rough on your holiday. I don’t have answers for you, but I’m responding as there are similarities between us. I was diagnosed with RA about 15 years ago after a sudden foot problem led to blood tests. For years I got along fine with just hydroxychloroquine, although fibromyalgia was added to the diagnosis at some point when lack of sleep was a huge issue, and amitriptyline was added to the medication mix. Then in the last three years I’ve had to have 3 lots of surgery, and I’m now in surgical menopause aged 49. Incidentally IBS was diagnosed years ago when I had pains, but turns out I actually had grade 4 endometriosis, and a tumour engulfing my right ovary..... I believe my menopause has kicked off the rheumatoid arthritis in a big way, and I started methotrexate this time last year. Anyway, I’m still not quite balanced, and have permanently reduced my working week to three days (such a blessing!),but I wanted to share with you that I find what I eat can have a drastic effect on inflammation for me. If I steer clear of gluten I am mostly ok, but if I have something with gluten, I’m paying for it within a few hours, not only in my intestines, but pain in my hands, feet ankles, back... might be worth a try. I hope your daughter joining you lifts your spirits, and that you can enjoy the remainder of your break.

SueDunn01
SueDunn01
in reply to girli1969

Wow definitely some similarities! I’m pretty sure the hysterectomy kicked off my arthritis too.

I don’t know why it takes them so long to diagnose gynae problems! It sounds like they missed your problems for quite sometime too.

I had a feeling gluten may of been a trigger 😩 I love bread and pasta and pizza - at home I was eating mainly fruit and veg as that seems to be the only things my stomach doesn’t hate! Although I can’t seem to digest raw veg anymore either. I will definitely give the no gluten a try - thank you.

I may mention hydroxychloroquine - I have never heard of that.

So it could be my sleep problems that made him give me the fibromyalgia diagnosis - that’s interesting.

Well done on you for continuing to work! I’m desperate to get back - for the purpose and the social side - sometimes I think I may go mad at home alone, especially in the winter in miserable Wales!

I moved from Surrey to Wales when I could no longer work as it’s much cheaper to live and my savings have stretched further but to be honest I’m not sure it was worth it - the wet cold weather is another trigger.

Many thanks for replying, it’s nice to know people do understand even if it’s not your closest love ones.

I hope you continue to improve - btw is your inflammation showing in your blood?

Thanks again. Sue.

girli1969
girli1969
in reply to SueDunn01

I meant to say, no, my inflammation rarely shows in my blood! I am positive however for rheumatoid factor and negative for anti ccp.

Hi Sue, girli1969 mentioned gluten free, i've found that Tilda Rice do gluten free, it's the pre-cooked & stick in the microwave packs, Gluten Free is on the front of the package, & they're not bad either.

Just thought i'd throw that one in! 😄

Ruth

You might be interested to do some research on LDN. I have understood that many with pra as well as fibro have had big help. LDN has shown to help with pain as well. This is a nontoxic alternative. Here links where you get all the info you need.Good Luck👍🏻

ldnresearchtrust.org and ldnscience.org.

Simba1992
Simba1992
in reply to Simba1992
Simba1992
Simba1992
in reply to Simba1992

Don't know why the links are giving me a hard time:(

ldnscience.org/

SueDunn01
SueDunn01
in reply to Simba1992

Thank you Simba - I shall have a read now.

Many thanks for your reply.

Sue

Simba1992
Simba1992
in reply to SueDunn01

Forgot to mention CBD oil which does help with pain, when taking in right dose and strength.😊 Simba

thelmar
thelmar
in reply to Simba1992

CBD has helped me a great deal. But there are a lot of dodgy people out there (which is why medical cannabis needs to be legalised).

Have a look at the Facebook group CBD Consumer Group UK/EU. It is a closed group and they very carefully vet anybody applying to join.

I feel for you, as it sounds like a rough roller coaster experience. I've had low level pelvic pain for years, with intermittent periods of severe pain that slowly became more frequent. For years doctors basically ignored it until I started bleeding just about daily. Anyway it turns out it was a collection of uterine fibroids and polyps in uterus and colon. They were removed in January and all has been well since. Anyway I know how defeated I was by just a couple of fibroids, so can well imagine that if you also have endometriosis and adhesions it's been hell.

It also sounds as if no doctor is really taking a good look at the whole of you, but are treating symptoms. So you end up with a mixed bag of drugs that may not be the most suitable. But even if your doctors aren't giving you the right priority, doesn't stop you really focusing on you. It's hard when you are in pain and worn down, but it really might help. So if food is an issue then a structured plan to work out what you can and can't eat - there's lots of information around about diets including on here if you put diet in the search box top right. But basically go back to the simplest possible foods and then add foods in one at a time to see what helps and what doesn't. Eating a good balanced diet is so important if you have RA as you need to fuel your body.

Exercise equally important, so nag your GP for a physio referral. I have damaged vertebrae in lower back, and swear by these exercises here. If I don't do them daily then I feel it.

nhs.uk/live-well/exercise/l...

And as for Methotrexate - it's been my best friend for the last 8 years. I am an ex-smoker, have had TB, two bouts of pneumonia and frequent bronchitis. Plus lung nodules. So yes I was worried about it - but it has been totally fine! These things are so individual, but you are well monitored. And I personally believe that all the effort I make to look after myself has really helped me cope with drugs without side effects (I also take hydroxy amd sulphasalazine). But also look I to Simba's suggestion of LDN - you can take it in parallel.

Oh, and my inflammation levels are generally normal now - even with hot and puffy joints. It's just the way I am.

Idea only SueD01, get yourself onto the 'Thyroid Uk' community here on health Unlocked and and write up your same story post. I 'HAD' fibromyalgia pains and over tiredness and more, now all gone, there is so much I know Thyroid UK members can help you forward on from what you have just posted. Sadly there are grey areas in the blood ranges that often get over looked, we get told we are OK fine/normal despite having many symptoms still presenting, so how can we be Normal or OK ? Just being low in vitamin B12, iron, ferritin, folate or vitamin D can all tied be tied in. Fibromyalgia for instance are symptoms of both low thyroid and vitamin B12 deficiency.

This is a good place to vent and ask questions. Welcome.

Pain sux, and I hope you find the right combination of treatment and drugs to help you. Keep being your own best advocate.

Try to enjoy your holiday and stay in touch.

Hugs.

Jill

Hi sue, you got me wen you said your mum passed. Reading what you wrote feels like a lot of stuff that i would say. I hope things are better now. Ive been struggling with these patches too. I didnt know how strong they were. I was also given morphine to stop but such a low dose it’s ridiculous going from such a high strength to a low dose. Im having to to the convertions myself to work how much to take.

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