Hi everyone, I'm still having quite a few issues at the moment and hanging in for my consultant appt in 2 weeks time. My main issue had been severe fatigue and generally feeling pants. However I am now experiencing quite a bit of pain but it does seem to move about a bit. Generally my hands and wrists hurt all of the time. What I then tend to get it this transient acute pain and often heat that can move from shoulders, elbow, knees, balls of my feet and various joints in my hands. All of the areas the pain moves to are a bit stiff and achey generally but it just seems weird how things move about. One day the pain is awful and the next not so bad and I feel a fraud for making a fuss.
Does anyone else experience this and is this part of the way RA works. It's just that I feel a bit silly when asked where it hurts and I have to explain this.
Thanks Rosie x
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Hi, you sound like you are in a lot of pain...I don't know if I'm right but my pain moves around...perhaps there are more joints affected than you think...I was told on here to write it all down on a daily basis..I think this would be a good thing for you to do, then, when you go to see your consultant it will be good for you to refer to. But to say again, my pain moves around sweetheart, I think a lot of people on here will say the same..I wish you some respite from pain. Maryx
Hi Mary thank you and yes I've just had a depo so hoping for some relief very soon. It's good to know I'm not going a bit barmy with the moving pain. I used to keep a diary and I think I will try that again. Take care xx
Hi I can really relate to the moving about pain , when I first saw my rheumy consultant I explained these same symptoms and she said its called Palandromic R/A ie moves around your body . and mine was becoming persistent . I still get severe pain when one day it's worse in my knees then next day it's my hips or my shoulders wrists fingers etc etc but over time I've found it's now all my joints pretty much all the time , and the fatigue is unfortunately part and package with this illness hope you can find ways of reducing your pain my love and resting when you can , and it will be finding the right medication that's works for you we all have R/A but everyone seems to cope differently on certain meds your consultant will see what's best for you keep us informed on how things are going Regards Teresa
Hi Teresa thank you for that and I do like a long word like palindromic that I can look up and find out more about. I do find it so hard to rest and try to pace myself, but it's a little tricky with 3 little ones and working 4 days a week. I've just had a depo so really hoping that'll kick in soon. Take care xx
Yes, my pain moves around and I never know from day to day what joints will be affected the most. Usually my wrists are the worse, but sonedays I can't turn my head due to neck pain, others it is agony in ankles and feet! My RA came on suddenly and with a vengeance - pretty much in severe pain every single day and many joints involved most days.
Thanks Susie, isn't it weird how it moves around, but good to know I'm not alone xx
Mine moved around like this for the first year and then it settled in my hands and wrists. I thought it was Palindromic until my rheumy said that only RA settles in the knuckles as he could see mine doing. Most recently it has mostly been in my feet and my achilles tendons. It's awful when it moves around because one day you're hobbling and the next day you can't turn your shoulders. Hope it settles soon Rosie and that your appointment helps. Tilda x
Well I am now hoping to soon be feeling a whole lot better ... I had a call back from the rheumy nurse around 3pm and she said to have another depo steroid injection, my gp rang 5 mins later as I'd left a message for him and said come down and he would give me the injection, so had it about 45 mins ago. I'm sooooo relieved, I know that by this time tomorrow I should be feeling so much better. The rheumy nurse said that I dint need to wait to see the consultant to have another injection, the fact that I've needed another will be enough for the consultant to know how bad I've been feeling.
It is so weird how this pain moves around and I'm so glad I asked the question. Thank you so much everyone who has replied and shared their experiences about this. Rx
I have always described it as my little RA man who trots around my body, stopping now and then to hit me with his hammer for a while, before moving on to a new site. It is just tp keep you on your toes you know.
I LOVE that SueB I have a wee man too with a hammer. Just had a friend for tea and she asked me where it hurts, I paused for quite a while and then felt as if I had to explain that I wasn't struggling to find my pain ... I was homing in on it! Then I told her that it hurts in my ankles, knees, elbows wrists, fingers, neck and shoulders! Most of these places hurt all the time so it becomes the norm (hence why I have to tune in) however, my little man currently has recruited two co-worker's because one is hammering my neck whilst the other two are working on my shoulders, they're working hard cos its burning .... bless them! X
Opal and SueB that is exactly how I would describe it. Do you remember that film/tv programme years ago when they shrunk some people in a space craft and injected it into someone's body and it went around causing havoc., incredible journey or something similar. I've thought I must have one of those and they get they weapons out wherever they stop!!
I'm so glad I'm not going mad, although having just re read this post perhaps I am!!! Xx
Hi Jazie, I tend to sleep with my forearms under my pillow just in front of my head and this keeps my wrists straight. I also find its cooler under my pillow which is also better.
Yes I'm sure my consultant can do more, I've an appt in 2 weeks. I only started mtx last aug and it's clear it isn't helping so I'm expecting them to make changes and hopefully I'll get the right combo for me. I understand it can take little time and patience in the early days but I'm hopeful they get it sorted.
Yes the fatigue is the worst bit for me too. Glad you had an injection and hope it works well for you. Thanks Rx
I think your RA must be more aggressive than my as your on biologics and I don't think I would qualify for them, which is good and bad if you know what I mean.
Please let me know how you get on sleeping like that. It's a bit odd at first, but I toss n turn a lot at night and it reminds me to watch my wrists. If I don't do this's can wake up in agony. Rx
I actually wrote a long message to you last night, just about to press send and my battery died!
Yes I did try it. I think it made my wrists and fingers slightly better but as I had my elbows bent, my elbow joints hurt when I woke up.
I will keep experimenting with different positions! Has your steroid injection kicked in yet?
I had mine on Thursday and so far it hasn't made any difference.
Before then I hadn't had one for about ten years. I remember the first one working well butthe more I had them the shorter they lasted. So I thought this one would be better as I hadnt had one for so long.
x
Hi Rosie Good news about the injection, hope it helps quickly. My pain likes to move around constantly. It mainly hurts my wrists and knuckles but jumps to hips, feet, toes, elbows, just about anywhere it pleases really. Sometimes just my little finger will hurt badly and then a single toe will join in. I thought I was going mad before diagnosis as trying to explain it to people was impossible. x
Hi paulywoo it is so good to hear that I'm not alone and that it seems a ver common thing with RA. You do feel like you're going mad!! I love this site for being able share stuff like this I think we would all feel so alone without it.
The injection is starting to help. Wrists and hands are still quite painful today but other pain is easing. I've got to try and get thru a manic week at work next week and praying I'll get really good relief my Monday. Thanks Rx
I'm having bad problems with hip at the moment so cannot wLk far. Find it really painful to lift up knee. Am forcing myself to do it, but not sure if this is good idea, will ask physio Monday. Anne x
I started off in my hands, but last year it started moving into a lot of joints, all the joints in hands, some in fingers, one wrist, both elbows, both knees, in heel of foot, smallest toes on both feet, and last week big toe and hip joined in. The pain is not severe so I can cope, except when I had it in feet and was just shuffling, Funny how such small joints in feet can cause so much trouble. I don't have have the massive swelling that I did in the beginning or the attacks which would keep me up all night and land up in tears. I am on mtx and sulpha which I think the mtx is controlling it to a certain extent, but they have decided to put me on Enbral which I am waiting to start. I did have a steroid injection in December and it was so fantastic, I forgot I even had RA, but such a comedown when it wears off. Am hoping that Enbral will help with the fatigue as we all know that is such a big part of RA. Ps we are not going mad lol just RA is such a weird disease!! and so hard to explain to people and I guess sometimes they can't see what is wrong with us as I just carry on with life with this background pain.
That is just so true, people just think you have a painful joint and don't appreciate everything else that goes with RA.
Have you had RA long? When you say it's moved into all of the other joints, has there been much damage so far? Sorry to be nosy it's just the disease is so new (diagnosed last summer) for me it's hard to know what course it will take.
Like you I don't have massive swellings. Luckily I've not yet had any joint erosion that Ive been aware of although there are some definite changes seen in an ultrasound last year of my knuckles. Having said that I haven't had an ultrasound or X-ray since May last year.
My consultant started by saying my RA was mild and when I last saw him in October he was thinking he needed to be a bit more aggressive in treating it. It would be nice to get some sort of idea of how bad this is going to get for me. I'm just on mtx 20mg right now but think when I go in 2 weeks he will put me on a combo as mtx is not working on its own. We shall see.
Anyway I'd be interested to hear how yours has progressed... and yes aren't steroid injections marvellous, I've just had my 4th and it hasn't quite kicked in yet. Take care Rx
Hi Rosie I have had RA for 2 years now I don't know if there has been any damage ie bone erosion. I am thinking not because I had no pain at all for 4 weeks when I was on the steroid injection, except for one elbow. The nurse seemed to think there may be damage in the elbow but I am wondering if it is carpal tunnel. I do have tendon damage. I have one finger on one hand that is stuck close to the other I cannot separate them, and my little finger on one hand is sticking outwards. These because I did have a lot of swelling and it caused tenosynovitis.
Yes he will most probably add another dmard to your mtx, you can have up to 3 at one time. No one knows really how their RA will progress. Mine has stayed at a level I can cope with but my consultant and nurses think it should be treated more aggressively. It seems as though you have a good rheumatologist, and that is the way they like to treat RA aggressively at the beginning. The only tips I can give is don't be the brave soldier, tell docs when you are not right and where it hurts, sometimes it does not show to the naked eye. If you need supports get a referral to ot and physio what ever you need. I am wear compression gloves for work and any other hard jobs I do at home to support the joints. Take nsaids it is important when you have swelling, although for me I have a thing about taking them and asked for a tummy protector when using them. When I had swelling a gel pad which you put in freezer was very good for taking heat and swelling down, but also can use in a microwave when you just need a bit of warmth and comfort for a joint. Take into consideration you maybe stiff in mornings and take a while to get going to try and get up half an hour earlier lol I know hard when you have the fatigue and I find the stiffness returns in the evening so even though you may just want to sink into the armchair for the night, get up and move around. flex your hands as well. Make sure you tell Nurse or gp who ever is doing your steroid shots when you are not getting the result you think you should be getting. I told my biologic nurse the last few steroid shots had not touched me, so she made sure that this last one went deep into the muscle in the rear, and my word it really worked.
Anyway I am whittling on. Wishing you luck in your next appointment. It does take time to get your head around this illness. I am still learning all the time and take care x
Thank you so much for sharing that with me. Yes I'm lucky I have a really good rheumatologist and I'm sure he will do whatever is best when I see him. It makes such a big difference when you trust your doc.
Thats really interesting what you say that about the steroid injections as I've had such different relief from the injections I've had. This is my fourth since last august and the best one was the second. As I said I had one on Friday but it's not giving me the relief I'd hoped for yet. The RA does seem to really affect my tendons too. I know the elbow and shoulder pain I get is tendonitis. Yesterday afternoon my Achilles joined in, boy that one hurts a bit. I still feel a bit like I've been hit by a truck and could sleep for England.
That's good advice about not being too brave. I am still doing too much, I know we shouldn't give in to it but I don't think I'm getting the line right between resting and keeping moving. I can't seem to let go at work and take some time off and this really is what I need to do. I need to rest, take care of myself and really give the drugs the best chance to work. I just can't let go but think I'm gonna have to this week.
It is a worry how the disease will progress. I will ask my consultant when I see him as they have so much experience.
Thank you again for sharing and for listening to me. I hope you get on well with the enbrel and things settle soon, Rx
Thanks Rosie for your reply. Just wanted to say I shouldn't really have said about the nsaids, as regards medication it is for your doctor to give that advice, and you take care x
yes I am the same its a strange thing to get cant say much more as I am new t ra too
Hi Rosie, you sound so similar to me (40yrs old 2 children and work) I was diagnosed last April and have just had (yesterday) a 4th depo as I kept flaring but in different places. Last week it was my knee, which was so sore I could hardly walk but that went 3 days later and then it was my right wrist and left thumb! Fatigue also an issue. My consultant (in Oxford) said that certainly can happen and it is still a flare and important to get under control. I too am praying this injection helps as much as the last, although my thuimb is still sore I already feel 80% better so good luck. Pacing yourself is critical, I find swimming in a warm pool really helps. Take care. Sx
Thank you and yes we do sound very similar don't we!! I'm really glad your depo is helping and you're feeling way better. Are they going to review your meds as it doesn't sound like they've got things under control? What are you taking now?
Unfortunately for me, this depo hasn't given me much relief yet. My hands are really painful still. Normally within 24-48 hours of a depo I'm nearly pain free, it feels like it's oiled my joints!! The fatigue is slower to go. I have to say that I've finally gone sick. I've not had a days sickness in 2 years and I'm gutted that I've finally given in to it. That said, I know it's what I need to do to let the meds and my body have a chance to starting getting things under control. Just 10 days now til I see me consultant. Please let me know how things are going, I'd love to hear how you're getting on. Rx
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