muscle weakness

[cynbil]

Hi every one, Just this one question. does any one suffer weakness in their thigh muscle , so much that their legs keep giving way? I am having so much pain and weakness that I can barely walk. I have recently had a flair and just getting over cystitis which has lasted three weeks, three different antibiotics before it decided to clear up. I am feeling very low at the moment. My ESR levels are at 40 and I am taking 11mg of pred at the moment I have had PMR for about 7and a half years now. I would like to hear if any one else has any experience with this. Thank you Cynthia, x x Cynbil

[Whittlesey]

Hi Cynbil, yes, I have that especially in my left thigh. today I can barely walk. my left thigh muscle -- quadriceps - is pretty bad. and now the right one, also, but not as bad. I have been diagnosed with meralgia paresthetica in my left thigh, which means that the inguineal tendon is wrongly "attached" to a femoral nerve in my thigh. small fibers have formed around the two -- keeping them "attached" when biologically and anatomically, they should not be. A neuro surgeon at Mt Sinai performed an operation in 2006 (before I knew anything about the GCA) which cut the fibers away and separated them. He said they might reattach and they have, making walking difficult, many thigh spasms. I need a hip replacement in the left hip, which may help. I don't know how the prednisone, esp., the high doses have affected this. today they are not good at all and they give way at times, also as your have spoken of. having a hard time walking today. I take neurontin and baclophen, both muscle relaxers and they help. When they don't help, I have to take valium, which does work, relaxing the spasms. I hope you get some relief and feel better. Your doctor should be able to prescribe neurontin, which doesn't seem to interfere with the prednisone and also baclophen. hope you feel better. all my best, Whittlesey

[Loco99]

Yes, I've had muscle weakness in my thighs, so much so that I couldn't get out of a chair without help, also my calf muscles gave out while I was climbing the stairs which was quite dramatic, that was when I was first diagnosed, I'm alright now thanks to the help of a biokineticist. You've had a really rough time lately but when you have recovered a bit maybe some muscle strengthening exercises would help. I hope you feel better soon.

[trish29]

Hello cynbil .. Yes I have been suffering muscle weakness for over a year now,not so much in my thighs but my left calf and both my legs want to give way.. I haven't been able to walk for a long time and rely on my scooters and my mobility walker.. I put this down to being on Prednisolone for 9 years now and all the different medications to help with steroid reduction such as Methotrexate .Azathiaprine and Salphasalaziene. At the moment I am on 10 mg of Amitriptilyne at night ,I should go up to 20 mg but I hate being drugged up . It seemed to help but I now feel I have more muscle pain especially in upper arms ,hands and buttocks.and I used to sleep well when I was first on it apart from the odd crazy dreams but now I seem to wake more during the night .I have read up about Amitriptilyne on the forum and have read that some other sufferers have mixed feelings. I feel it is not mixing either with the Pred or my Propranolol Blood pressure tablets. I hope you feel better soon.. I hate the constant exhaustion which has got worse ..I have ultrasound with my Osteopath and I am considering Acupuncture to the lower spine as well. I am between 13- 14 mg pred a day and would love to get to 12.05mg ..I am going to stay as I am for now until the weather bucks up a bit or a miracle happens and I can have some good days. This PMR goes on forever. Best wishes trish29

[cynbil in reply to trish29]

Hi Trish29, Thank you so much for replying, I thought I was having things bad but you seem to be much worse than me, I am sorry about that. How long have you had problems with walking and does it get any better so that you can get around any easier? I was considering getting a scooter , would you recommend it? My rheumy wants to put me on MTX but I feel reluctant to try it Reading about your experiences It sound like an assault course with no results at the end This is an awful illness and there doesn't seem an end to it . I was wondering how long any one has suffered from it? I seem to be rambling abit sorry about that. Take care Cynthia x x( cynbil)

[trish29 in reply to cynbil]

Hello Cynbil..as you know through so many sufferers on this Forum that we all have PMR so differently..we are all different in what medications we can take, I was on methotrexate for a good while ,a couple of years or more but I wasn't given the right care while taking it . If I had my present Rheumatologist then I might be further down the recovery road . I used to be very sick while taking methotrexate and the other medications and had to come off it because it affected my liver .My legs started getting bad about 2 years ago but have really got worse in the last year. Please consider a Mobility Scooter , it gives you some freedom and you get to know the shops etc where you can get around..in Leatherhead I have 3 helpful places ,I love to see my nice girls in Clinton's , Boots and Sainsburys and the security guys are really helpful as well. There doesn't seem to be a time zone on PMR after 9 years I pray it will fizzle l know people that have had it 15 years and 30 years and then again some people have it for a short time ,2 years perhaps..I wish you all the best with your decisions and I will watch the Forum with interest. I am going to my Osteopath tomorrow for gentle ultrasound on my spine and gentle massage on shoulders,arms and legs and then hopefully I will try some accupunture on my spine as well.Anything to try and walk again. Best wishes trish29

[DorsetLady PMRGCAuk volunteer]

Hi cynbil,

Yes I did suffer muscle weakness and spasms in right thigh for a few weeks after I'd dropped down from 20mg to 15mg Prednisolone. Bit scary, cos you feel as if you are going to fall over all the time. That was in September last year (following my husband death in August and a flare up in May and July) been fine since then. So hopefully yours is just a blip and not as serious as others have reported. If you're not happy then go back to GP, or try upping your dose of Pred for a little while to help you get over your recent problems. Good luck. DorsetLady

[mickt]

Hi ,I suffer from muscle weakness and loss of core strength ,it like im pulling a cart all the time ,slowed down considerably. Im currently on 20mg pred ,and methotrexate 15mg.I got down to try and put in a dvd and it took considerable effort to get up.I walk for half hr daily then im done in for rest of the day. Vasculitis under control with drugs,im a type 1 diabetic ,I also have addisons disease. My consultant rekons im borderline APS sticky blood to .Im on 30mg amytripeline for diabetic neuropathy,they help me sleep amd do away with burning sensation in legs and feet. All the best mick.

[cynbil]

Hi every one. Thank you for taking the time to reply, This weakness seems to be a common occurrence so I can carry on knowing I am not on my own. The question is can it be treated or is it to be accepted as part of the PMR?I hope you all improve and suffer much less pain. please take care Cynthia, (cynbil)

[optimist-ok]

Hello Cynbil. Yes, I had the same problem in 2012 & spent 2-3 months on crutches, couldn't walk without them. I've had PMR/GCA for 2yrs 2mths now & am down to 6mg a day. I still have problems with the left leg, but minor pains compared with previous ones. I hope you will soon have relief from your leg weakness, it is such a nuisance - one thing after another!

[MaisieB]

Hi Cynbil

I had a lot of pain and weakness in my thighs - more so than my shoulders a lot of the time. As it affected my balance I lost confidence especially in snowy and wet conditions. To encourage you though - it has got better. I am now down to 2mg daily after 4 years and hope to get off the drugs altogether in the next few months. My muscles are weak - including my thighs - but now I try to walk 10,000-12,000 steps a day as gentle impact exercise is very good for muscles and bones. I don't always manage this but it does make a difference when I can. Hope that helps - I just wanted to let you know that there can be a light at the end of the tunnel!

[cynbil in reply to MaisieB]

Hi MaisieB Thank you so much for the encouragement, I know that I should try to exercise but I just couldn't manage it at the moment I have been going to a club twice a week but the last two Mondays have been unbearable But it did include walking to and from the bus stop and a bus journey but that was my limit and got more and more difficult. But I am not a quitter so I will keep trying. Once again thank you Cynthia x x

[PMRpro Ambassador]

"I know that I should try to exercise but I just couldn't manage it at the moment"

Even walking for 5 minutes at a time several times a day does the same as the recommended 30mins of exercise but is easier to manage when your legs aren't behaving.

If you look at your leg muscles - are they still the same sort of size they were? If you wear trousers are they far looser than they were when you first got them? Pred can cause muscle wasting, especially if you have a long time on a dose of over 10mg. I have been on 3 different sorts of pred and it happened with the second one - I haven't had such slim legs for years but now I am on another sort the muscle has got back to normal and whilst then I could only manage a few steps (and using crutches) no I do the 2 floor's worth to our flat every day at least once. if you think they are wasting away you should speak to your GP who might manage to get you some physio to teach you easy ways of exercising.

[cynbil in reply to PMRpro]

Hi PMRpro. Thank you for that.. As I have only been fairly inactive for a few days I haven't been to worried about the exercise as I always think I will get better. but I will take it on board what you say and I will definitely try to do as you suggest I can join an exercise class which caters for people with limited abilities when I can get there. Best wishes and take care Cynthia

[averis]

hi cynbil

I was diagnosed giant cell athuritis and was put on 40mg Prednisolone oh boy did my life change for the worse I was loosing my legs weakness in the musels sleeping a lot i could hardly walk felt very weak also started getting the shakes severly dropping things all the time. i went and told my gp but he seems to think you don.t get them symptoms but you do i went on you tube and on there people ended up in wheelchairs because of it even cats and dogs and horses that are on prednisolone could not walk . then i get told by my gp they don.t think i have giant cell arthuritis they think its polymalia . then they think i have not got that . i was fighting since jan 8th to find out what was wrong .i have been very ill since 8Jan had chest infection water infection and then went down with a cold on top of it and ecoli i thought my boby was just geting worse.I have been at home through all of this and i.ve had no help from anyone . i have even had to go out and get my food shopping in go hospital appointments plus go to gp appointments i was so weak i thought i would not get back home appart from appointments I have not been out since Jan 8 th because i have not felt safe to do so. now because they diagnosed me wrong i.m coming off the prednisolone i.ve come down from 40 to 30 mg but getting some funny things happening coming off them. i now call it the devil pill. I will be glad to get back to normal. they are now trying to put it down to my depression yet when all this started it was a blood test i had done and was called in by my gp stating i had a serious condition i,ve not felt depressed all through this my depression has been fine . if i was you go see your gp again don't suffer it .all the best to you Joan