Am I normal or unusual for a RA Victim??: Hi. Can... - NRAS

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Am I normal or unusual for a RA Victim??

patrickd profile image
85 Replies

Hi. Can someone help me, please? I'm just wondering if it's perfectly normal to be diagnosed with Rheumatoid Arthritis and to feel this way or if I am (maybe) somehow subconsciously exaggerating my symptoms?...(see below)

I feel "all around" lousy (a bit "flu-like"). To be a bit clearer, picture this scenario...I feel "as if" at 64 years of age (mind you I am 56), I recently did a "full body" ALL-out "intense" Aerobic workout for the advanced (without having done ANY exercise whatsoever for a full 2 years AND without any warm-up), just this past Tuesday (No, not yesterday, but about 48 hours ago would be the best description, and suffering that aftermath feeling?). Honestly, I just don't want to get out of bed, and when I do it is painful to move in various joints. Both my wrists, thumbs, feet/all toes, ankles, both elbows (odd, never had painful elbows before), and left shoulder ache upon the slightest of movement. When I rise after a solid 8 hours of sleep in the morning, I feel as if I haven't slept AT ALL (a couple of days even) but I have gotten plenty of uninterrupted sleep the past few days. My husband and teenage boys mock me and say "you are oversleeping and exaggerating"...get over it! So I am wondering, I am doing that now? I've never had (IDK even if I'd call it a flare-up) this intense type of overall ill feeling that I can recall. NOPE, not Covid 19, no cold or virus, no one in my house is/was sick at all, and I haven't been around anyone in many days given our weather situation.

So what do y'all think? Am I exaggerating this? Has anyone with RA experienced this type of feeling? Maybe it is a BAD flare up or IDK?

85 Replies
Gnarli profile image
Gnarli

Not medically trained here and diagnosed 2016. You experience certainly chimes with mine. That fatigue, the aches, pains and feeling absolutely shocking is exactly as I was in the early days and until the meds started working. It always surprises me that our nearest and dearest don't do a little homework on RD so that comments such as have been addressed to you stop. A little understanding goes a long way. I hope your current weather situation is improving. It looks grim

patrickd profile image
patrickd in reply to Gnarli

I understand completely. I'm not doctor either but sometimes I feel that maybe my RA is different from others. I know my numbers are "through the roof" (I was told by a few different doctors). RA Factor is somewhere in the 500's and 3 doctors told me they have never seen it test that high. Geez, being in pain is one issue but being in pain with NO energy is just horrible. BTW I am a Steroid "lifer". I probably need a temporary boost but I don't like to play with my dosing without my MD approving it (they are all on holidays this week).

sylvi profile image
sylvi

I crash after lunch everyday with sheer exhaustion and am so tired and am fit for nothing.xxxx

tyncwmmarchhywel profile image
tyncwmmarchhywel

Hi Patrickd, know exactly how you feel, I has a steroid inj., 8O mgm on the l9th Dec., and I take a daily 5mgmbPredislon daily, first time I have not felt the benifit of a st., inj., like you sleep well, but awakening is a nightmare 8 ish., must get out of bed vat once or maybe i will still be there in a week or so, thinking of a second oppinion about meds in the new year, better things for the new year to you.

patrickd profile image
patrickd in reply to tyncwmmarchhywel

IDK. I feel like I'm crazy at times and question my symptoms. I am sitting here so darn EXAHAUSTED and I just slept a full 9 hours without moving really. My son says " you sleep too much that is your problem". I know that isn't the problem. On usual days, I sleep about 7 hours and wake (sort of) refreshed but NOT lately. My son is only 16 and all about himself so I can't really blame him. Then my husband...annoys me. He goes to work at 2:30pm, gets home at 12am, and wakes at around 1130 am and complains "he's so, so tired". Give me a break. I was diagnosed with RA 20 years ago and I fear that it's just progressing and that is that. I fight best I can but sometimes...there is no fight left.

tyncwmmarchhywel profile image
tyncwmmarchhywel in reply to patrickd

you really must start putting your self first,its you who has this horrid fatigue disease what are your meds like. Others tell me that if your fatigue is really bad that your r a is not being controlled enough. take care.

Deeb1764 profile image
Deeb1764

many many of us on this site sleep a lot due to fatigue or simple exhaustion of having RA. Don’t beat yourself up and maybe download some of the NRAS booklets for families to help them understand your illness too.

We are all different on how we react to Autoimmune and our medications and some days you might want to skip thro a field of tulips and then the next can’t move.

It’s a weird set of conditions that hit us all and 3 years in still trying to get a grip on it!

patrickd profile image
patrickd in reply to Deeb1764

I think that is a great idea...print out some info regarding RA. I just feel like a "bad" mom lately. Seems to hit me a little bit worse every Christmas. I mean I really AM "Santa". I do ALL the shopping, all the cleaning, all the baking, all the wrapping (with the exception of my son helping with others) and on top of that my husband expects ME to shovel the snow. I mean c'mon. I just simply CAN NOT do it. Ah, yeah, honestly, I don't want to do it either but I also, just can not do it.

Deeb1764 profile image
Deeb1764 in reply to patrickd

get printing and get them Reading or open chat discussion casual and not too intense just enough to get the ball Rolling 🥰

And remember people do get to the point they don’t want to over hear your health matters too. So it’s checking in on them if they ask how you are doing.

My hubby and I run a traffic light system Green a good day ( not had that in a while) amber ok ish but up and down and red he knows leave me alone or just make me a hot drink or check in but don’t expect too much. It’s a quick way of us communicating without all the detail!

patrickd profile image
patrickd in reply to Deeb1764

I LOVE that system you and your hubby have and I might like to try that too. Thank you for sharing that with me!

Flinda profile image
Flinda in reply to patrickd

Your family definitely need to lower their expectations of your abilities to look after them and start instead to raise their own efforts in looking after you.

Having said this, my family still don't try to understand how I'm affected by this awful disease which is why I had to look after myself by breaking away from their constant negative comments and expectations.

I now find life much easier living alone and having a very quiet Christmas, on my terms. They all get together and I'm sure they still wonder why I don't want to join in. Its their total lack of empathy which I just can't cope with, on top of everything else.

Fortunately, I think my daughter is started to "get it" but she has her own life to enjoy now so I wouldn't want to hold her back in any way.

RA really is a life changing disease!

patrickd profile image
patrickd in reply to Flinda

OMG. You poor dear but I totally "get it" (sort of in the opposite way). My sister and brother disowned us due to my "changes" and inability to "perform" up to their needs (taking care of our mom & dad for one but a big list of things I couldn't do anymore, so they disowned). These are the people I thought are supposed to love you no matter what. (BTW fun fact, Jeffery Dahmer killed and ate people's body parts but his family continued to visit him in prison)! So not only do we have to bear all the physical pain but tons of emotional pain that goes along with it. Geez, we are a sad bunch, aren't we? Thank God for this site where we can talk to those sharing our pain. We don't get much sympathy from those who well frankly are "supposed" to L O V E us but just do not understand. They see us, (some) every day, and think.."wow, she looks great, and seemed totally good yesterday, so she must be using it as an excuse or be outright lazy! "They" saw me running around yesterday, cleaning, walking, smiling, etc. but then today, 24 hrs later, I can barely move, and I am totally exhausted....THEY "see", THEY "judge". While "WE" stumble in pain, we cry (many of us "hiding" behind our pain because we don't want our kids to get scared), many of us on these outrageous doses of powerful (albeit effective) steroids/drugs that frankly "change us" inside (sometimes outside too) but many, many times change the way we act/react. Not understanding at all that we can NOT help it! People on steroids (sometimes just 15-30mgs which is considered relatively low doses) even murder others (it's happened thank God, not to me), they get VERY angry, VERY emotional, they outright change, and yet they/we are judged as being "mental", or (sometimes) "menstrual" or "pre-menopausal" etc. My "EX-immediate" family (brother, sister, niece, nephews all of who I loved dearly and who I also THOUGHT loved me) ALL told me I was "nuts" and "needed" mental help because well yeah, sorry, I tend to get a little "different" (moon-faced, outspoken), angrier, more emotional, and frankly a bit high strung when I'm taking 60-80 mgs of Prednisolone for months (sometimes just 40mgs do it for me). So I try to seclude, stay away, so I don't unintentionally hurt anyone or say the wrong thing (which I tried, then THEY accused me of being selfish and too "self" absorbed, too all about me) and now only never spoken to ever again, after just about begging for forgiveness without ANY simple response). It's a painful, lonely place.

medway-lady profile image
medway-lady

If I were you before assuming its really RA I'd get a thyroid check done by your GP as that can be exhausting. If you have and still feel like that then you're RA might not be under control and perhaps ask for more blood tests to check. The trouble is RA is systematic so yes it could be RA but equally it could just be something else. Thyroid failure is an auto immune condition and often linked.

patrickd profile image
patrickd in reply to medway-lady

I had a thorough blood work check just 2 weeks ago and all my numbers were good (except for my inflammation etc). My Thyroid is being treated with medication and is being monitored regularly so it doesn't seem to be the culprit at this time but thank you for the advice.

medway-lady profile image
medway-lady in reply to patrickd

So was mine or so the doctor said when it was tested and I felt awful. I've had Hashimoto's for over 40 years and the dose was changed to 100 mcg a day and then another GP ordered it to be tested again as in the UK they test routinely for T4 and the T3 rarely. The paniced GP rang back the next day to double the dose of thyroxine as it was way out so still worth asking about. T4 was normal but T3 way way out. Now a note is on my records to check both and that to tell any GP that both must be done.

patrickd profile image
patrickd in reply to medway-lady

I've been to so many specialist regarding my Thyroid. One thing they did confirm was that nearly every person has a "comfort zone" (so to speak) as far as numbers go. There is such a big gap between the normal and abnormal and one size doesn't fit all. My thyroid has finally been stabilized and I know the signs. When my thyroid is the culprit my skin gets so, so dry and starts peeling and hair starts falling out/breaking. I also know from my past I get pain and fatigue but honestly...it's a bit of a different type. The pain for me with the thyroid as the culprit is more of dull ache, with pins and needles, and there isn't that inflammation involved whereas I can not wear my rings. I can judge everything on that. IF pins and needles start we need to adjust my medication and I'm right EVERY time. I am very much "in touch" with my thyroid response...it's almost weird but I've been watching and knowing since 20 years of age.

medway-lady profile image
medway-lady in reply to patrickd

At least it's one thing to climate in my case its fatigue and my eyebrows fall out. I also have kidney disease from a medical injury and that causes fatigue but nothing can be done about that so it's a case of living with it. I do not recognise the symptoms you describe as my RA is under control with medications and really isn't an issue. At first when diagnosed it was horrid but once remission is achieved then life does get back to normal and apart from giving myself an injection once a week and taking a couple of pills every day life is normal. But I tested positive for RA (pANCA etc.) and I do believe although not medically qualified that it may be easier to treat RA positive patients than negative.

helixhelix profile image
helixhelix

“a "full body" ALL-out "intense" Aerobic workout for the advanced”. Not sure you need any other answer than that! RA bodies struggle to adjust to shocks and that would have been a shock.

girli1111 profile image
girli1111 in reply to helixhelix

I read this as that is what she ‘felt like’ her body had done…. But not what she had actually done, I could be mistaken

helixhelix profile image
helixhelix in reply to girli1111

you might be right!!

patrickd profile image
patrickd in reply to helixhelix

That is what my body "feels" like. Unfortunately, I can NO longer do a "full" body aerobic workout but I remember the last time I attempted to do that (in my 20's) before RA and what I felt like 2 days later. O U C H

Chrt profile image
Chrt

Hi Patrickd. before I was diagnosed I was exhausted constantly, put it down to age & demanding job running own boarding kennels. After diagnosis & quite a few blood tests still felt the same & by now had moved from private to nhs. Another blood test 12mths ago & when I went for results was told Madam your B12 levels are dangerously low & started on injections straight away & they,ll be for life. Somebody on here told me B12 levels are not routinely tested during blood test unless specifically asked for? The exhaustion I felt was unreal, I remember just getting up in morning having a coffee with head on table feeling like I,d been working overtim with no sleep for days! Dunno but maybe check just what your bloods are being checked for? Now the exhaustion has gone & my brain is pretty clear but I don,t have much energy & tire very easily. Hope you can get through to your family the reality of RA, feeling fab one minute & awful the next. I think you need to rest as much as your body is telling you to. Good luck :)

patrickd profile image
patrickd in reply to Chrt

You might be onto something. I probably need my D's and B's checked. It's just been so long since I've had any major issues with my RA I kind of forgot what it's like. I'm always fatigued...since RA diagnosis. I was told by my RA/MD for some, that never goes away even it the RA is fully under control or in Remiss. My fatigue is just more intense lately so hmm...I say I'm in a big flare up. We haven't had BAD weather like this with the barometric pressure all over the place in many years. I mean it was 45 degrees and dropped down to 0 within 4 hours. Geez...my body can't keep up and I am 56 now.

Chrt profile image
Chrt in reply to patrickd

Hope you can get it under control soon & the fatigue eases off & you get back to feeling like yourself but in the meantime rest as much as your body is telling you to :)

ruth_p profile image
ruth_p

It sounds like you are having a bad flare, you need to contact your rheumatologist asap. It might be that your meds have stopped working properly.

patrickd profile image
patrickd in reply to ruth_p

That's what I'm thinking too. I've tried so many meds and I am a bit worried I've plateaued so to speak now. I've read that after a while the meds can stop being as effective resulting in a switch to something new. I guess your body finds a way to bypass the medication and do what it wants. RA really stinks doesn't it? Although, it could be worse so I count my blessings.😇😉

ruth_p profile image
ruth_p in reply to patrickd

This is what happened to me in 2015 the Humira (anti tnf) I was on stopped working completely and I had a massive flare. My CRP went from 1 to 20 to 279! They swapped me to tocilizumab (IL6 protein inhibitor) which started working after just 24 hours. I’ve been on it ever since and it’s still working well. Good luck

patrickd profile image
patrickd in reply to ruth_p

Well, maybe it's time for me to switch things up. I've been on Actemra for about 3 years. I'm glad you are doing better and I pray it keeps working for you!

Ascidian profile image
Ascidian

I don't think you are abnormal at all. Before I was diagnosed (with PsA, not RA, but they have similarities) a lovely GP was rather surprised when I said that I didn't really feel tired, just knew I was getting older (in my 50s at the time). I had days when I felt worse, but not too many. It was only when my meds really kicked in that I realised I HAD been tired for the past 15 years or more. First I struggled to sort out anaemia, then it was vertigo that no-one took seriously until I finally saw a neurologist for other problems. And then the PsA hit. I was brought up not to make a fuss and to just get on with it, no matter what and it had just been going on so long I hadn't realised how bad I felt. Then one day I felt great and my husband even noticed that I walked up our road with a spring in my step. For the last nine months, I have felt like me again - that feels so good. Clearly people in their 50s and 60s DON'T normally feel exhausted. (Sadly, i feel rubbish at the moment, but that is down to a 2-week cough and 5 days of fever with little appetite. On the mend, but just hoping to get my mojo back soon).

Anyway, the point of this is to say that autoimmune diseases really DO make you feel lousy. Hope you feel better soon and that your meds will give you some kind of remission. Then you need to find a way to educate your family...

patrickd profile image
patrickd in reply to Ascidian

What is PsA? I believe the UK is so much more advanced when it comes to autoimmune disease treatments (well, at least the patients are anyway). Everyone here is much more knowledgeable and "out of the dark" as far as vitamin levels, medication, treatments, etc. I find that the wonderful people on this site seem to know more than even my MD's. Honestly, seems that the UK takes these autoimmune diseases to the next level as far as treatment goes. Almost seems like the USA threw in the towel with these hard to treat diseases...really!

Ascidian profile image
Ascidian in reply to patrickd

PsA is psoriatic arthritis. AS far as I am aware it doesn't cause the same level of fevers that RA does, but is difficult to diagnose as 50% of sufferers never get raised CRP. So lots of patients are diagnosed very late (even in the UK)

patrickd profile image
patrickd in reply to Ascidian

Yes, I've heard of that and that is just horrible too. BUT is there really any "good" autoimmune disease"? I am so sorry you have that. PsA seems like RA but PsA is more on the outside of your body than on the inside making things a bit more challenging in my opinion. Hmmm...I would like the autoimmune disease called "Beauty-ohmygosh-i-got-it-ish"...the autoimmune disease whereas you can eat whatever/whenever you want, as much as you want and somehow maintain a perfect figure and also somehow you appear to continue to look as if you are only 25, with this glowing, non-aging skin, and feel totally fantastic all the time! Yeah, I want that one!

Oh wait...I did have that disease in my 20's but it was cured in my late 30's and that's when I was diagnosed with RA!!!

achyknitter profile image
achyknitter

This sounds like a really bad flare perhaps it might be an idea to contact Rheumatology next week and describe your problems and see if they can adjust your medication. I have had the same when I have overdone things but Christmas is a particularly hard time of year and difficult not to overdo. Don’t know if it is feasible for you but I eventually came to the conclusion that once I developed RA things could not go on as they had in pre RA days. I had to stop overtaxing my body and giving it sudden shocks or I would end up spending a good portion of my life in bed. Please don’t let anyone guilt you into not resting when you need to - fatigue is very real and you need to listen to your body to overcome it. Hope you are feeling better soon.

patrickd profile image
patrickd in reply to achyknitter

You are right and I've always been in full denial about that really. I don't think we treat RA as seriously here in the US. It's fluffed off it seems. It doesn't help that I live with "3 guys" either. Men (USA DUDES anyway) tend to be "all about themselves". They get a "cold" and they are on the couch for days whining and miserable. I am just expected to be there always, I guess, I'm the "mom". The only one who takes care of me is well, me...as I take care of everyone else. I think there needs to be some sort of "wake up" call in my household because I just can't do it anymore. Believe me, I want to and always will "want" to take care of my guys but the body just can't.

CripLady profile image
CripLady

I’d educate your family tbh, as that will not be helping anything. I was frequently in great pain and exhausted, for at least the first 6 years of RA. I am 12 years in now, and have been ‘settled’ for probably about a year. Stress was my biggest battle, so I would recommend cutting out as much as possible. That really helped with pain and energy levels. I also started taking amitriptyline to help me sleep more deeply, which has made a huge difference. Step at a time. You. Are not alone in this.

patrickd profile image
patrickd in reply to CripLady

Gosh cutting out as much stress as possible sounds like a plan but having 2 "teenage" boys...(3 if you include my husband) doesn't seem possible. Driving the boys all over town doesn't help either. My husband works 2nd shift 3-1130pm (he goes to work right when the boys get home from school) so I'm the chauffer. My 16 yo is working on getting his license but he really NEEDS a job first given how expensive car insurance and gas is! My husband is changing his shift in April to 630am-230pm (so that will help).

Jumbo2012 profile image
Jumbo2012

No that sounds exactly how it is.

patrickd profile image
patrickd in reply to Jumbo2012

I guess I forgot what a really bad flare it like...NOT that I want to remember. It's easy to forget that pain, Just like having a baby. It's horrible but we forget it so much so that sometimes we even do it again.

Haz58 profile image
Haz58

Been like this for 2 months with not having any RA meds since August (another story/ies). It's not you exaggerating. And as for 'get over it' I think my biggest frying pan would have a big dent in it! They need to read the booklets you were hopefully given about RA. You need their support! Good luck. Xx

patrickd profile image
patrickd in reply to Haz58

Thank you for confirming I'm not exaggerating. Many people do not realize just how outright challenging autoimmune diseases are. Honestly, it seems the only disease people (in the USA anyway) really and sincerely sympathize with is Cancer (understandable, as I myself am that way too) and unless they are really educated about the effects autoimmune diseases have on the body how would they? Naturally, and understandably, when people hear "cancer" (any type of cancer) there is an outpouring of care and support (please do get me wrong as I agree with that 1000%) but when you say you have "RA" it's a bit different. People just say to me "oh, my Aunt Mary is 60 and has that too in her knees and she is just fine". "Aunt Mary wraps her knees up in an Ace bandage daily, applies some cream, and goes to work with no problem". "You really need to use a heating pad or an ice pack on that, and you'll be just fine." "Aunt Mary also takes Tylenol, and off she goes.." Well here's the thing...it's probably NOT RA that Aunt Mary has...it's most likely "arthritis" which yeah, many people have. They do not understand that Rheumatoid Arthritis is a totally different type of "ball-game". Seems like everyone I've EVER told that I have RA says the exact same thing regarding "Aunt Mary". EVERYONE except a nurse or a person who actually has or is close to someone with RA. 😪

Haz58 profile image
Haz58 in reply to patrickd

Totally agree. The thing is though...with cancer there are possible cures...with RA there are NO cures only control. And the control can take years to find the right medication to control it. It is totally misunderstood by most people unless they have it or have a dear one who has it. my hubby didn't get it al all. I started reading him stuff from people on here and he finally understands. I used to get come for a walk it'll do you good...errm it's hard enough getting out of bed never mind going for a walk around the block. It did my head in! It takes a while but persevere in educating your family. Eventually they will understand. And go at your own pace not the pace they think you should go at. For 2 months my hubby has had to do everything on the house. Even helping me dress, shower ect. He's been a diamond now he understands. It makes such a difference. All the best Patrickd. If you need a vent just vent on here we're all in the same boat and help each other. Xx

patrickd profile image
patrickd in reply to Haz58

THAT'S a excellent point about cancer and honestly, never even thought about that. You're right...there are cures for cancer but NOT RA. All we have are "cover ups" I call them. Nothing cures it but it "hides" it for awhile...longer IF you are lucky! Thank you so much for pointing that out! BTW I used always get that too!! Go out and get some fresh air you'll feel better (yeah, right)! Go for a bike ride, take a ride in the car, oh and my favorite one yet...get some EXERCISE...that will help! Haz58 I LOVE YOU! I thought I was the ONLY one that "got" those comments. Also, my sister in laws keep telling me every time I see them..."oh, you shouldn't take those medications the doctors are giving you because they are going to kill you...try "natural" things!" REALLY? "Take some high doses of Vitamin C and Calcium will "cure you". GIVE me a break! I'd like to see YOU try that when you are in so much PAIN you can NOT even stand up. NO offense because I'm sure there are some "effective natural" alternatives out there somewhere IF you can afford them (I've tried many diets, supplements, expensive stuff, and gave up). So easy to say and give all this advice when YOU aren't the one going through it, you can't work to pay for these things!

Haz58 profile image
Haz58 in reply to patrickd

Love you too Patrickd 😊 😄🌹😁😂😂

Patreece profile image
Patreece

to me this is normal it’s a horrible thing go through and I’m same every day but as women we are strong willed so we av carry on regardless I hope your pain eases for you xx

patrickd profile image
patrickd in reply to Patreece

I don't think I'm as strong willed as I used to be anymore. I tried to fight RA but after 20 years, RA won and well, dragged me through the mud.

Maureengibson profile image
Maureengibson

I have AS rather than RA. However if I do any exercise session, I do suffer with flu like symptoms and a flare in my pains, along with intense exhaustion. It does sound like you have triggered a flare. I certainly don’t thing your exaggerating your symptoms. It may be worth contacting your rheumatologist if the flare isn’t settling, for a possible meds review. Be kind to yourself, ignore the families comments, they should know better, and be encouraging you to rest up for now. Hope it subsides soon, and you can enjoy the new year celebrations 🤗

patrickd profile image
patrickd in reply to Maureengibson

Thank you for your kind words. Tough to ignore the peeps you adore! When I do acknowledge hubby tells me I'm nuts...that hurts. To be fair, he's under a lot of stress too and has back pain (which I get sick of hearing about too). We make so couple. Merry Christmas.

Monkeysmum profile image
Monkeysmum

Your symptoms sound very similar to how I feel in a bad flare, but just wanted to add to the comments from others, that if things persist and you don’t start to feel better in a few days it may be worth exploring other reasons for fatigue as well. I have had periods of anemia, low b12 and low vitamin D levels and all three have made me feel completely exhausted, which when added to the usual RD fatigue is just horrible. 🤗

patrickd profile image
patrickd in reply to Monkeysmum

Agreed! I need a UK physician. I'm sure my RA MD will chalk it off to RA with no further exploration. I do love my RA MD and even if I didn't I do not have many options at all. We only have 4 really good specialist within 100 mile radius. I've been to all of them too so US, we get what can.

Leics profile image
Leics

In my opinion you are absolutely a normal person with RA. Sounds as though you’re having a massive flare triggered by the awful weather and the stress of Christmas and doing everything for everyone else with little thanks and no sympathy and no help either. I would definitely think your family need educating that you’re not superwoman even if they expect you to be. Don’t feel guilty if you need to rest keep taking the pain meds and have a word with your rheumy team as soon as you can. Your 16 year old son ought to kick his own ass into gear and shovel the snow. Sorry if that sounds a little harsh but if you don’t look after your own health then they’ll be having to do more for themselves anyway which I’m sure they could do short term. I hope you feel better soon get yourself some rest 🤗.

patrickd profile image
patrickd in reply to Leics

Doesn't sound harsh at all! The good news is my son's buddy is just starting to study Rheumatoid Arthritis in his advanced bio. class. Maybe HIS buddy will kick some sense into him! It's tough. I have NO ONE to "baby me" (so to speak) anymore. Mom & dad passed away years ago (miss them and their sympathetic ears/unconditional love) and my hubby was never the "sympathetic type" to anyone (except himself). He was spoiled horribly by his mom and sisters. I do not (never had) have a mother in law (maybe that is a good thing?) but both my sister in laws treat me as if I'm lazy (to be fair, I guess I would think that too). Screw 'em all. Glad I have this group to offer advice and a bit of a sympathetic ear.

Leics profile image
Leics in reply to patrickd

You can rest assured we will always have your back and a sympathetic ear. Unless you know or experience this disease it’s difficult to explain and just ‘get on with’. I would definitely download some information from NRAS including fatigue leaflet and maybe encourage others to read them or just put your foot down and say dinner won’t be sorted until they’ve read them and do a quiz just to check they’re not skipping it. I’m so fortunate that my husband is well versed about my bad days and does loads for me because I can’t manage it including most of the cooking. Having a partner who was spoiled as a child is difficult because they go straight from mommy’s apron to another woman who they expect to be pampered by. You still need to look out for yourself though.

patrickd profile image
patrickd in reply to Leics

All I can say is SPOT on! I feel like my husband's mother. Doesn't help to have 2 sister in laws who jump at any chance they can to find me not "serving" their brother either. So, I stay away but well it's an endless circle of "you never come around here" than it's "you don't do this, you don't do that, my poor brother and his back, he's in pain and I don't "do" enough to support him". Screw 'em.

Leics profile image
Leics in reply to patrickd

absolutely if they’re so worried about him then let them pander to his every need. Families eh can’t choose them unfortunately but don’t have to do as you’re told either you’re a grown woman. I bet it doesn’t help your stress levels. Stick with looking out for yourself for a while not going to be easy but necessary.

Haz58 profile image
Haz58 in reply to patrickd

Go girl! You find out who your real friends are with RA. We're all friends on here. Xx

Chockyuk profile image
Chockyuk

Sorry to hear you’re feeling like this.

If it’s any consolation, I’ve felt the same for the past 4 years fatigue wise. I worked full time, but now I’m down to 4 days as I’m so exhausted all the time. I can’t afford to give up work permanently as I’m going through a pretty awful divorce, so I need the money.

My Rheumatologist is sending me for iron deficiency and thyroid blood tests 🤷‍♀️

My RA bloods have settled at the moment, after being all over the place with flare after flare for about a year. I’m now on 20mg of Mthx and 4 Sulphasalazine tabs a day. Im sure it’s just the dreaded fatigue, I’m 60, so I’m not sure I can put it down to old age yet 😂

Maybe it’s just the stress of my situation, as I’m also on anti depressants.

But yes, yours does sound like fatigue, but also, the fact that your joints are hurting as well, sounds like you might be in a flare. Definitely get onto your medical professional and see what they say, as you can’t go on if you’re in pain.

Good luck 🤞

X

patrickd profile image
patrickd in reply to Chockyuk

YOU are a superwoman! How can you possibly work? I tried so hard to and I couldn't do it. I had a great job too but it was WAY too much trying to take care of 2 babies (at that time), a household, and feeling so, so bad. The fatigue is bad enough but that pain. OMG. I gave birth and honestly I feel that the pain from RA is worse. Anyway, I admire your strength.

Chockyuk profile image
Chockyuk in reply to patrickd

I’m afraid I have no choice, but that’s life. 🤷‍♀️

I do hope you get yours sorted, a steroid jab usually gets me going again 😊

patrickd profile image
patrickd in reply to Chockyuk

I too LOVE the Steroid jabs BUT I was told I would need WAY to many to receive relief because of the extent of damage to both my wrists and left hand. The last "jabs" I had worked for a total of 2 days and they went right back to normal pain. Sometimes I think it's better to just have the pain all the time because when it actually goes away (once it did), I am amazed it's possible to feel that good and then when it comes back it hurts quite badly until I re-adjust. I think there needs to be some sort of delicious "cocktail" with a huge dose of steroids in them that is safe and effective.

Pulfs profile image
Pulfs

Sorry to hear you’re suffering and getting no emotional and physical help at home. As been suggested you need to download the NRAS booklets on fatigue and getting family to understand RA is not just pain but as an autoimmune disease it affects the whole body and fatigue levels. I’ve had RA over 25yrs and even now I pace myself to stop myself running out of steam completely . Since being out on on retuximab biological infusions every 6 mths 12 yrs ago, this has helped enormously and I know when I need next round cos fatigue gets worse.

Have you any friends that you can talk to and perhaps they could help you to explain how things are with your family.

Hope you get them to see what this disease is all about and help you more . Take care xx

AgedCrone profile image
AgedCrone

My advice would be to not to overdo it again like you seem to have done!Think & prepare before you undertake any strenuous exercise! 

patrickd profile image
patrickd in reply to AgedCrone

So much easier said than done (at least for me anyway). I am "high-strung" to begin with. I am "all over the place" (as my son put it) when I "do" housework or cook. It's from a previous job where I had to "multi-task" for many years or be fired.."horrible"..and it just stuck with me and I just can't change. I swear I am incapable of slowing down unless I am "flaring" up. Thank you so much for the advice my dear.

AgedCrone profile image
AgedCrone in reply to patrickd

Delegate! You are lucky enough to have a family ….ask for their help.I’m  80+ Feeling dreadful fighting Covid on my own over Christmas….every single help line was unavailable over the holidays…...so don’t tell me it’s easier said than done! You just have to dig deep & get on with it.

patrickd profile image
patrickd in reply to AgedCrone

Well, you are going to have to deal with MY comment "easier said than done" as it was a reply to your comment..." try NOT to overdo it". I am who I am, and when I feel good, I am raring to go, with ambition and energy, and getting things done MY WAY. I am an "if I need it done right, I DO it myself" and so sorry but that is something about myself that (right now) I can NOT change about myself. Maybe it will change when I am 65, 70, or 80 but at 56...not quite yet. Especially being the only female in the house.

patrickd profile image
patrickd in reply to AgedCrone

Also...I had Covid too and it wasn't fun. I too couldn't get in touch with any of the "so called" immune boosting" drug help from ANYONE. I called hospitals, pharmacy's, doctors, my primary..you name it no one wanted to help and I was scared. It happened on a Friday and there was no one all weekend. I didn't know what to expect given how bad my immune system is. I did finally get in touch with someone from "NYS CDC" on a Sunday, who were extremely helpful. I don't know how things work in the UK but is there a "CDC helpline in the UK?...you probably called them. I am so sorry you are sick. I pray you get over it quickly. I was sick for about 5 full days but Covid really hit my stomach and head rather than a cough or respiratory. 😪

Haz58 profile image
Haz58 in reply to patrickd

I was the same...you can slow down, you have to slow down. I was the 'carer' for my hubby after his heart attack, worrying if I thought he was doing too much. I'd garden, cook, decorate, do everything Now the tables have turned and I hate it but I'm learning. X

Happy5 profile image
Happy5

Reading you did an Aerobic workout for the advanced made me feel like collapsing. In my early days prior to diagnosis my usual workouts (done them all my life was very active) left me in joint pain and worn out. Few years on now know any activity will come with fatigue after. I get the flu like thing from time to time too. Family and friends will never get why you fatigue so easily and so much. It comes from both the condition and the " hard core" ( as my friend calls them) meds we need to take.

Do some research as others have said about the condition, the meds and treatment. If you have access to specialist nurses call them or discuss all this with them, they have good tips on how to manage the condition.

Develop a bit of a thick skin to what ones say about your health symptoms and do what works for you.

All the best 😊

patrickd profile image
patrickd in reply to Happy5

NO Aerobic workout. I just was trying to describe the best I could of exactly how I feel. LIKE I did an "all" body, high intensity, Aerobic workout! Wow, my entire body would ache for days (even in my early 20's)!

Happy5 profile image
Happy5 in reply to patrickd

Whew. Got ya yes RA in a flare makes you feel like that as well as exhausted all hideous. Hope things resolve asap.

J1707- profile image
J1707-

when my RA is active I become Rip Van Winkle… sleep is constant but doesn’t relieve me in any way . I tend to go with it fighting it just makes things work. Empathy from your family would help you mentally.

patrickd profile image
patrickd in reply to J1707-

It would be nice but at the same time, I "get it". They are probably burnt out and sick of "mom" being or feeling sick all the time. Other kids moms aren't in bed at 7 nor are they too tired to take Jimmy to the shopping centers. Because I know my kids were dealt with my health "issues" (and being older too) I have always tried very hard to make the time I spend with them "quality". ALWAYS! Even it was just "quiet" time etc. I always go the extra mile probably a bit too "extra" but to be fair I also went through 7 surgeries, and many "treatments" even have a baby. When it finally happened...I cherished it, savored it, made the most of what I worked so hard to achieve I guess.

Ryka profile image
Ryka

Sorry, I had to react after your first few sentences.I am 29 and I feel like I am 70. So, no you are not exaggerating your symptoms.

I have a general body ache, stiff joints, everything is just a little bit harder, as if there is an underlying exhaustion underpinning my existence.

A leak siphoning away my energy and strength.

I go to sleep tired and I wake up tired. It takes me an hour or more to get out of bed: waking up, convincing myself that I havento get up, gingerly getting up, limping into the bathroom, limping back, sitting to rest, convincing myself I cannot lie down, getting dressed slowly, most days bra's are impossible, and slowing getting down the stairs, sideways, clinging to the railings...

Anybody who says you're exaggerating is being a complete utter total asshole. They probably lie on the sofa and moan when they get a cold, well with RA is your immune system attacking you. All the time. Your body is trying to kill itself and not die. AT THE SAME TIME!

Its not psychological

You cannot f***ing get over it!

The only time I felt any relief is on medrol (gluco corticosteroids). But, I am starting olumiant 4 mg soon, so, have to wait and see what that gives. Its a new type of immune suppressant.

I am sorry I seem very angry. Its just the injustice of such comments gets to me. And I have had to hear to so often.

Happy5 profile image
Happy5 in reply to Ryka

Well said 🤗

patrickd profile image
patrickd in reply to Ryka

I was just questioning myself and IDK...feeling maybe I was over exaggerating somehow. I've been dealing with RA for over 20 years and have tried many, many drugs and yep...the best relief is the Steroids! Yeah, others "help" but full remission is achieved with high dose steroids and yeah, temporary, as soon as they are dropped it's back. Thank you for the confirmation. RA sucks

medway-lady profile image
medway-lady

I'm really sorry but feel really upset and I must point out in the light of some comments that cancer kills ! to compare RA which I agree is no picnic in the park with a disease that can involve chemotherapy and very, very nasty courses of treatment is frankly obscene. If you know anyone or have indeed have had to undergo treatment for cancer perhaps you'd not dismiss it so lightly. I'm offended that anyone can compare a disease that it is true has no cure but has many medications with a disease that kills so many whilst we will die with RA but not of it is awful. If I get banned for saying this then I really shall not mind as it is so silly to even link the two diseases. We are lucky we know it might be a long road but we have some control we can choose to slow down, change medications and have a certainty that RA might disrupt and change our lives but not kill us. A cancer patient has a lifetime ahead of uncertainty as do their loved ones. They may be fortunate and achieve a cure but sometimes not and anyone who can compare the two conditions is misguided.

patrickd profile image
patrickd in reply to medway-lady

So true and well said. I apologize as I didn't mean to offend anyone. It was "my bad" to even "try" and compare the two.

medway-lady profile image
medway-lady in reply to patrickd

It hit a nerve as my husband has undergone Radiotherapy this past few months and might get remission which will be great but there is always the threat of a spread into bones.He's had so many scans and MRI's and the awful wait for diagnosis which was within weeks but time does drag. He will have a lifetime of hormone treatment and gets the hot sweats that ladies do during the menopause plus it has other effects. Trouble is sometimes we can see RA out of context, RA isn't fun but it's not so bad as say Motor Neurone, MS etc etc. Even my kidney failure is liveable with I just have to be patient and sometimes accept some limitations but even then its really not many. So stay positive and you will get to a better place as its still very early days. Look forward with hope rather than backward in angst.

patrickd profile image
patrickd in reply to medway-lady

I take offense with your comment "you'd not dismiss it so lightly" because I CERTAINLY didn't do that nor I would never, EVER take "away" ANY of the (what I would define as) horrific health challenges and various treatment ramifications for anyone experiencing ANY type of Cancer (and other diseases). I also know from experiencing Cancer Radiotherapy with my dad, (RIP NOT from cancer either) the various torturous (some invasive) testing & treatments, side effects, and the horrible anxiety that goes along with it, the family & loved ones, the patient diagnosed. The ONLY blessed thing I can possibly say (it is a fact too) is that AT LEAST there are now "cures" for many various types of cancers that were (in the past) considered a death sentence. Three of my very close friends can now officially put (stage IV) cancer behind them given how wonderfully effective the treatments are TODAY! Our conversation certainly wasn't slighting ANYONE. The correct statement within our conversation was/IS that there are now actual "cures" for cancer (regardless of how challenging those treatments/cures are). I think it is absolutely incredible that we have been so blessed with "cures" and I can only hope & pray that we find a cure someday for RA wouldn't it be wonderful if we could cure MANY more (if not ALL) diseases? I would never, ever say or slight that one disease or illness can be compared less or more so to another because you can not do that. Blessings to you

medway-lady profile image
medway-lady in reply to patrickd

I don't know why you're shouting at me and hope that in the future mankind will indeed find treatments, medications or manipulations that will eradicate or improve treatments for all life limiting diseases, conditions and injuries.

MerielPB profile image
MerielPB

No, you are not imagining/exaggerating. This is how you will feel until your meds are sorted & you are on an even keel. Although I have been stable for several years now, the fatigue is still a significant part of my life. Good luck.

patrickd profile image
patrickd in reply to MerielPB

Yeah, why can't something be done to really HELP with the fatigue. I've been on many drugs and even steroids didn't really take that away. When I was on a high dose of Steroids they added a feeling of "I can not sit still" but OMG I am so tired feeling.

Poshcards profile image
Poshcards

you sound completely like me and I have Lupus cross with RA xx

patrickd profile image
patrickd in reply to Poshcards

Oh geez, Poshcards you really got the "double whammy. I am sorry. I have friends with Lupus, friends with RA but not any with both. Bless you my dear. I hope you are doing "ok".

Poshcards profile image
Poshcards in reply to patrickd

We have to carry on, life isn't easy,had this for 30 years now xx

Haylonico profile image
Haylonico

Hi there. No-one without RA really "gets RA'. Ive had 2 acquaintances be diagnosed with RA and both have commented they would never have known how awful I would have felt until they experienced it for themselves. I've had it for 23 years now and when I look back at my teenage years (I was just coming up to 20 when I was diagnosed), I realise alot of my symptoms were present but not considered a problem. At college I had debilitating fatigue and would often go home at lunch time to sleep and miss afternoon classes. My parents just thought I was being a lazy teenager I guess. I often had power naps before I went out partying n the evening after a day at work! Anyway, eventually I get a huge flare and extreme joint swelling and somebody had to take notice. I feel sorry for myself now when I look back. I stopped telling me I had RA as people just didn't believe me or thought I was weird and didn't want to.be around me. It's not cool for a 20 something to.have I guess. It took along time.for.me to come.to.terms with having RA so.young amd there wasn't anything like this back then. So, I feel your pain, your frustration and I get you. We all.do.here. that is what is great about this lovely supportive community here- we can come along and have a whinge and feel heard amd supported. ❤

However, I would also say, get your thyroid checked. After I got my RA largely under control (some flares along the way, as it happens with this disease), at some point I got hugely lethargic again. My RA was OK and as I was trying to conceive and then had the baby amd sleepless nights etc, my fatigue was blamed.on this. It went on for a few years and then I was at a point where I felt I could slip.into a coma, it was terrible- but made me.push the doctors to investigate- I had an under active thyroid which I've learnt is common with RA (once you have one autoimmune disease, you are likely to get another). So that is just worth knowing also I think.

Go easy on yourself and I hope your boys take some time.to.read up on RA and support you a bit better. They don't know what their future holds healthwise! My husband ended up developing type 1 diabetes and so we both have a mutual understanding of our health nowadays. All.the best. X

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