I have had weakness in my legs arms and hands, since my illness started. Which effects my walking, getting up out of a chair, climbing stairs, getting in and out of the car, getting up from a crouching or kneeling position, lifting things and taking lids off things. I have always thought it was due to the stiffness and pain I experience, but I am not so sure. The only time I do not have it is when I am on medication, I.e steroids and hydroxychlroquine.
I have been on hydroxy since July and the weakness has gone again along with the stiffness and aching, like it did when I was on steroids.
So yesterday I went for a nerve conducting test and he checked my muscles for myopathies and my nerves. The only thing he found was carpel tunnel in both hands.
Has anyone else who has weakness in their limbs, had a negative test whilst on meds that are controlling the symptoms?
Thank you
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Daisy1991
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Doctors have a major difficulty distinguishing between what we mean as weakness and what they mean by it.
I have polymyalgia rheumatica. The only way to treat it is pred on a permanent basis until it goes into remission. Without pred I cannot do the things you describe and I would say I feel weak and so would lots of other PMR patients - there is however no "functional" weakness to be identified in PMR. That means, muscle strength is unaffected - but I still can't do things.
How old are you Daisy (she said slightly rudely)? Is it "just" lupus you have?
I am 56 in a week's time. I am still under investigation no clear dx.
It was thought I had pmr by my GP when it started in October 2011. Didn't see rhumy till April 2013 when the gp couldn't reduce my steroids below 10mg without symptoms coming back. So I was on this dose till I saw rhumy.
Rhumy wasn't convinced it was pmr because all my symptoms were not consistent with the condition.
He started lowering my steroids, so he could do a PET scan because he thought it was large vein vasculitis, it wasn't The PET scan showed some consistencies in my shoulders of on type pmr but nowhere else, and inflammation in my tendons.
In October 2013 I was on holiday and I had a funny turn, I was really fatigued,really breathless, and could only walk less than 100 yards without being totally exhausted. It was really hot and I thought it was the weather or possibly a virus. When I got home it continued until May. Saw gp did some tests, nothing conclusive.
Since this time I have suffered bouts of fatigue joint pain, nerve problem, headaches memory problems, hot flashes. Palpitations, mild fevers, getting out of breath and feeling very exhausted by doing very little, along with the symptoms I started with and I have also had abnormal kidney readings. I also have positive ana speckled.
Now rhumy is looking for the cause. He has put me on hydroxy I have been on it for 10 weeks and I feel like a different women almost all my symptoms have gone.
Thank you, yes it is. I have not been on pred since October last year so I don't think it is withdrawal. I was only on 1 mg when he took me off it and I was reduced down very slowly.
I forgot to mention, I am sure I am sun senstive, I get what I think is the butterfly rash, rhumy also thinks it looks like it. My symptoms become more promblomatic when I have been in the sun, that is I get really stiff, achy, joints are sore and if it is really hot and intense I get really fatigued and my legs don't work, that is they feel really heavy and I can't walk very far.
My symptoms are sometimes better than others. They always seem to flare after being away, but this has only happened since my episode in Oct 13. Prior to this the sun never bothered me.
Do yes I agree you could be right, maybe I have both, whatever both are. Lol
Yes I can agree with that entirely. It's a waiting game that never seems to arrive, but at least on the hydroxy my symptoms are a whole lot better. I still have had minor flare ups, but I now know what they feel like, so when I start feeling any aching in my shoulders or legs I reach for the arcoxia and it seems to nip it in the bud.
By the way that is another reason why I don't think what is happening now is pmr, because my rhumy told me arcoxia wouldn't bring pmr under control, and I know it helps my symptoms, so who knows!!!! Another mystery lol.
Out of curiosity, would you mind telling me what you were like at onset. That is how it started, how it progressed, how did you feel in yourself. At what point did you seek help. What tests they did and how fast did the prednisolone work for you.
Also if you don't mind saying how old were you at onset.
Would be really good to know to see if we were similar thank you in advance.
I was still 51 when I had what were probably the first signs. The very first was being unable to sleep with my arms above my head - my favoured position! I regularly attended gym classes to try and get my weight down and noticed that even in the special one for "older ladies" I started to struggle to get onto the step in step classes. I just put it down to being unfit and tried a bit harder - the others were way older than me and by then I only went to try to keep that class going for them as it was under threat. Then a few months later I went to the gym to start getting ready for the ski season - and in less than 2 mins on the crosstrainer my thigh muscles were killing me. The pain went when I stopped but however slowly I tried to build the time up it didn't work. Now I realise it was claudication, a typical GCA symptom. I had to leave that gym as I couldn't use the machines or manage the classes - I had to find one with a pool. I did aquaerobics and Pilates - both life-savers and they gave me my best days.
Then walking up stairs got more difficult, especially ones that had a quite high rise - shallow ones were OK, it's the same even now. I ached and was stiff - fastening my bra was next to impossible, getting out of bed required effort. Turning over in bed was a planned action. I was so tired all the time and would fall asleep in the afternoon if I sat down. I was in bed at 8.30pm and struggled out of bed feeling no better at 9am. The best days were when I had an aquaaerobics class at 9.15 as I could move fairly well after. My hands hurt - mostly sharp pain due to tendonitis and synovitis - and I had what seemed to be RSA in my forearms and wrists. i couldn't hold things and dropped them all the time and I tripped over nothing. My feet felt as if I was walking on sharp pebbles mixed with broken glass. The only shoes that I could walk in at all were my mountain walking shoes! Very chic...
I repeatedly went to the doctor - blood tests were "all normal, there can't be anything wrong". Eventually I had a major flare and another problem at the same time that led to me having to give my licence back to DVLA temporarily (incorrect info from the doctor, I shouldn't have done that immediately but waited). Anyway - I now couldn't walk or use public transport and we'd moved temporarily to a house where the loo was upstairs, the kitchen downstairs - I could barely manage the stairs even on hands and knees and now couldn't get to the gym. I was stuck and alone as a result. And very miserable.
I got out to our flat here in Italy where there is a lift and the flat is on one floor and so managed to get up the mountain to ski because i had no stairs to fight - the movement of downhill skiing was a perfect "loosener" and even though I was getting through industrial quantities of ibuprofen gel (not tablets though) I could get out and meet people. In the afternoons and evening I researched online - and discovered the PMR my GP hadn't recognised from being so fixated on the lab figures. 1 in 5 patients has no raised ESR/CRP. I was one of them.
I was eventually given a 6 week taper of pred to tide me over a trip to the USA by a patronising rheumy - who then refused to listen when I told him about the 6 hour response to 15mg pred: I got up from the computer and walked downstairs normally and back up with a cup of tea in my hand, no thought about stomping down one step at a time like a toddler or putting the full cup on the highest step I could reach while I crawled up on hands and knees! I took my last 5mg tablet on a Wednesday morning - and by Thursday afternoon was in bed in pain and in tears, worse than I had been before. Luckily a different GP in the practice was convinced - because the rheumy wasn't, he wanted me to take sulphasalazine as he was sure it was psoriatric arthritis. No idea why - other than PMR isn't good enough for a lot of them, they think it is beneath them. After a bout 6 months I suddenly realised the hand and foot pain was gone and the sharp pain in my hips was also fading.
Can't remember anything else offhand - as if that weren't enough!
Mine started near my 51 birthday in October 2011, but mine symptoms were nothing like yours.
I started with aching in my shoulders arms and legs, if just felt like the morning after doing exercise, when you haven't done it for a long time or as if you were getting flu.
After about 6 weeks I was still aching, so I went to my GP, she thought it could be PMR, but said I was a bit young to get it. She made a referral to the Rheumatologist. I was supposed to go in Feb 2012. She did no investigation at this point.
As weeks went on, I felt really stiff, worse in the morning, but it didn't go away, just got less severe, also i was achy, weak and sore all over and still felt flu like.
I also had trouble getting out of bed due to weakness and stiffness. I used put my hand on the corner of bedside table and try and push my self up. I couldn't raise the quilt with my legs it felt too heavy.
Walking was really slow with small strides and i couldn't walk any distance before my legs felt to weak to carry me, it also exhausted me.
When I got in the car I used to sit on the seat and twist round a little, then I used my arms to lift my legs one by one into the car because I had no strength in my legs to lift them independently. I found this really difficult because my arms were not strong either.
It took me a good 3 to 5 mins to climb a flight of stairs, I used to have to hold on both rails and try to heave myself up also difficult because of my arms. Coming down was a little easier but still difficult.
I found it hard getting up from a sitting position, the lower the seat the worse it was.
I remember my husband helping me in the bath one day because I was aching so much and then he nipped into town. I ended up staying in the bath,in water that had started to go cold because I couldn't get out. Luckily my husband was back in within about an hour.
By January 2012 I couldn't get up at all without help. My husband said I couldn't go on like this till the rhumy appointment which was about another 6 weeks away. By this time, i was in so much pain it was unreal there wasn't apart of me that didn't hurt. I was popping pills like they were smarties. Anti inflammatories, co codimol paracetamols, nothing worked fully, took slight edge off it that was all. So I when back to my GP.
I saw a different one who also thought it could be PMR. He did a blood test and put me straight on steroids. I took them at 9am by about 5pm my aching had gone and everything else started to get better after a few days.
I went back the week after, the blood test came back and my ESR was 100. So he said it was PMR and said I didn't need to see the rhumy because he could treat it. How wrong he was because, i still ended up having to see the rhumy in 2013 as I said and i still seeing him now.
What will be the outcome, I am not sure, but I live in hope that one day I will know, watch this space lol
That does all sound very familiar - and a very typical presentation of PMR that is left to progress. Most rheumies might suspect that an ESR of that level is GCA presenting with PMR symptoms.
I haven't had a bath for about 10 years - I'm too afraid I won't get out again! I got stuck in the bathroom when we moved - our previous house had had all lever handles which I could use, this one had a knob and I couldn't turn it! Luckily my husband happened to be home (actually the only reason I'd locked it as he gets iffy if I don't). Must be man-thing - I haven't locked loo doors at home since the girls were small!
I wonder what makes you feel we sound different - I can't have remembered/written well because what you say is all much the same as I was at various times.
It was just the difference of onset you said you noticed,not being able to step at the gym etc, mine took quite a while to get to that stage and came with weakness. I feel the weakness was worse that the stiffness, although I did have both. Also about you feeling like you where walking on broken glass etc.
I think there are such a lot of conditions where symptoms overlap, it is difficult to decide, which one belong to which lol.
When I said all I experienced to the rhumy he said these were not typical of pmr.
I thought gca was when it effected your vision along with headaches etc which develops when you already have pmr.
Well he's wrong - or there are lot of people on the PMR forums who haven't got PMR! We all responded to pred though - so it wasn't fibro. It took several months to get from the stiff shoulders to the gym problems - many rheumies would tell you this slow onset is not typical of PMR, that you wake up one morning unable to move. However, if you ask a lot of people who did wake up and suddenly it was there, when they think about there had been signs beforehand of the sort we describe, they had just accepted they were part of ageing. And that is what my GP said to me "what do you expect at your age?". Barely over 50 - and going to the gym several times a week, I don't think it was ageing! Not these days!
Yes, GCA is typically thought of as just affecting sight, but it isn't. You can have the vasculitis in a lot of other arteries, especially in the chest, and that can give rise to PMR-type symptoms. The one I was referring to was claudication - usually they mention pain in the jaw when chewing which goes away when you stop, but it also can affect the thighs and the upper arms. About 1 in 6 patients who is diagnosed with PMR goes on to later be diagnosed with GCA, PMR was just one part of the whole.
Doctors do have a real problem with the fact patients use the word weakness when they can't measure a loss of power in the muscles. I have explained it to them as a feeling our limbs aren't able to do what we want them to and other patients have agreed. Slowly the fact that patients are working with rheumies in the research field is beginning to bear fruit with them and they are seeing that terminology can be quite misleading on both sides.
I had quite a few symptoms that are classified under GCA - but was never asked the questions that would have exposed that. The doctor was fixated on eyes, temporal pain and headache - which don't appear in by any means all patients with GCA. Less than 20% will come to the doctor about headache for example, even fewer because of vision problems. But they have this "typical" image - and it fits maybe 30 or 40% of patients. Which leaves the majority as being "atypical"!
Nearly forgot - the Leeds rheumatologists have done work that shows hands and feet are involved in PMR. Patients describe the feeling as we just have. Many rheumatologists don't know about it though.
Thank you pmrpro this is very interesting. I take it you have done lots of research, as you are very knowledgeable.
I think a lot of rhumys have a text book approach to symptoms and if you do not come under the umbrella of the text book, they dismiss your symptoms as not being consistent with the disease, I know mind does.
They also rely very much on blood results, and as you have mention they can be negative. I think they should concentrate on peoples symptoms more and shouldn't dismiss them out of hand just because the don't fit the bill. After all we are the ones feeling the symptoms we get, and Know they are real, sometimes i feel like the rhymy thinks I am making it up.
I also wish they would test for things when you are free of medication. I am sure this has an impact on the results. I finally tested positive for ANA test 6 months after stopping my steroids.
I had the same test whilst i was on low dose of steroids, (5mg) and it was negative. I do know the ANA can be negative when symptoms are controlled, but I can't say i was symptom free on 5mg of steroids, they just were not quite as bad. i think 10mg minimum for me to make me symptom free.
hydroxy is working far better for me than 5mg steroids does.
Early on I used to have foot drop and "leaden foot." I had the nerve conduction test, and it didn't show weakness (and I could still walk long distances, I just felt like I was walking with a lead foot). Years later the weakness has shown up in the test, along with carpel tunnel. That was twice more than four years ago. I've been on a low dose of prednisone for a while with plaquenil. I've been making myself walk upstairs and it's a bit of a struggle, and I'm a little wobbly, so I don't know if I had the test again what it would show. Although, at night I have a sort of tingling. numb sensation in my feet. At least it's not pain.
Yes I think it is weird how things show up later. I have been having different nerve type things going on, twitching in my legs, stabbing shocks in my feet and toes, hands going numb and pins and needles etc etc.
I had nerve conducting test 2 years ago because of pins and needles and numbness in my right hand and arm, it showed nothing. Now it is showing carpel tunnel on both hands.
Maybe we just have to wait for things to develop!!!
Funnily enough I had nerve testing yesterday and the doctor said that 90% of lupus patients referred for testing don't show any problems on the test, and yet there is clearly something going wrong with their nerves - they just don't have the technology to pick it up!
This all sounds so familiar. I too have the weakness in my arms and legs along with numbness and tingling and shooting pains at times. Often my legs feel so heavy and it takes so much effort to walk but you couldn't tell by looking at me that it does. I have a hard time holding my arms up for longer than a minute and then the pain is intolerable up and into my shoulders. I also had the nerve and muscle testing and it came out fine which was a shock to me since I have so many issues with the weakness. I also have lost a lot of strength in my hands and have difficulty opening jars and packages and it even has affecting my writing. I was just diagnosed with lupus and rheumatoid arthritis in Dec 2015 although I've had symptoms for years but I didn't go to the dr then because I thought it was due to the degenerative disc disease in my back. I would go to the beach and amusement parks whenever I got the chance but every time I would start feeling really bad and get really red soon after I got there. I couldn't figure it out then but I now know it was due to being in the sun. It's a crazy and unpredictable disease !!
Yes I think my symptoms are more like polymyositis than polymyralga rhumatica.
I only read about polymyositis recently and haven't seen rhumy since I have know about it, but I think it describes my onset perfectly.
My nerve test showed no myopathies but I am on hydroxychloroquine and my symptoms have gone since being on it, so don't know if that would make a difference.
If you dont mind me asking, how did they dx yours? And what meds are you on.
Myositis is diagnosed by measuring enzyme levels in the blood - they are there because in myositis the muscle cells are damaged and break down, releasing their contents which can then be measured in the blood. The presentation of PMR and myositis can be almost identical - the differential diagnosis is made by these blood tests. They are never raised in PMR.
I have weakness in my left hand and leg. I had nerve conduction test about 7-8 yrs ago (when I was trying to convince my Dr that I had Lupus and he was ignoring me) anyway no carpel tunnel was found. I was diagnosed with lupus in Oct '15. My specialist says that my lupus affects my muscles and skin, hence my weakness. At the moment I take 400mg Hydroxychloroquine, 30mg Amitriptyline and 5mg of Prednisone (which I can increase to 20mg if I have really bad pain for a number of days). They have suggested other medication but I have to have a Dexa scan first to check my bone density as I'm classed as high risk of injury because I compete and work with horses.
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