Rheumatoid arthritis and muscle atrophy

[Hildestj]

I am norwegian, so my english may be a bit wierd.

I am a 33 year old woman. I was diagnosed with reumatoid arhritis in 2014. It has affected my left knee and ancle pretty bad. I have had multiple steroid injections, but the inflammation has been bad and ongoing for almost 5 year now. So I am limping around, due to pain, but also now, a severe muscle atrophy that has progressed true this years.

It may be stupid, but I started thinking about ALS and if the atrophy in my leg could relate to ALS. But I have no other symptoms.

The difference between right and left leg is 3,5 cm.

What do you think? Is it something I should get checked out, or is the muscle waste due to not beeing able to use to foot proberly. Does anyone have experience with muscle atrophy? I dont have any significant artrophy, but I an oveall weaker because of many years with pain and being unable to do exercises. Is it possible to build up muscles again when having RA? I hope I can be more active soon. I am starting MTX today.

[PFKAAde]

Hi Hildestj

Your English is very good!

I needed a total knee replacement in 2014, well — I needed it in 2012 but was considered ‘too young’ by the powers that be. So I had to ‘put up with it’ for about 5 years. As a consequence I was walking mainly using my right side for a while. At the end of this time period my left leg was considerably smaller than my right, so to answer your question yes - it is very possible for it to be caused by lack of use / RA.

You could always run it (excuse the pun) past your doctor if you’re worried.

After I’d had my TKR I then had a whole world of back problems (emergency surgery type problems). This left me with massive muscle atrophy in my lower body. I hit the gym with a personal trainer. Three years later and I have recovered a lot of the lost muscle mass (not all and still have neuropathy). My thoughts on exercise and RA is that I wish I’d done something over the last 20 years. I realise it isn’t easy when your joints hurt and you feel like cr4p, but even just a little whenever you feel able will help to at least maintain some muscle.

I was surprised how quickly it made a difference, and if I didn’t have the spine issues it would have been easier (I couldn’t physically stand up when I started as my legs were that weak and my balance was / is shot).

Something like yoga or Pilates is good - but seek out a skilful practitioner who is used to adjusting things for those of us with restrictions. I’m not a fan of swimming just due to the hassle (and pain) of getting ready, walking barefoot etc etc, but lots do enjoy things like aqua-aerobics or similar and this also doesn’t stress the joints too much as it is non / less weight bearing.

But again, if you are worried — see your doctor.

🙏🏻

[Hildestj in reply to PFKAAde]

Thank you for your reply. Reading your post gives me hope, that maybe I can grow some muscles back again. But my ancle is still pretty bad. I can’t manage the day without pain killers and a small dose of prednisone. Hate taking them, but the pain is too bad. I guess the atrophy have a natural cause, and that other symptoms would have been present in a disease like ALS 😊

[PFKAAde in reply to Hildestj]

I’m no doctor but I’d imagine there would be some other symptoms of something like ALS. But your doctor could put your mind at rest.

You definitely can retain / regain muscle with RA — it just takes a bit more planning! If your ankle is painful, for example, it might not stop you targeting your quads, hamstrings, core etc. There is always a way of doing something! For me though, I needed help otherwise I wouldn’t have known how to do things properly — or even what to do. I just wish I’d done it sooner.

🙏🏻

[Fruitandnutcase in reply to PFKAAde]

I was just thinking Pilates too to build up strength in a gentle way. I think yoga is good too but my body prefers Pilates.

If you decide on that then look for a well qualified teacher who you feel comfortable with and who runs small classes - no more than eight in a group. My teacher is a physiotherapist who knows what our (mostly elderly) should or shouldn’t be doing.

I find it much better to keep as active as I can otherwise my body gets even stiffer.

[oldtimer]

I've had problems with muscle atrophy too and yes, it is possible to build it up again.

[Jimbo64]

Hi Hildestj I’m from Scotland I suffer from RA I have suffered for years I have had doth my knees replaced so go to the doctor and ask if that is a option I did and in three years I have had my right knee replaced and my left knee replaced give it a try all the best from Jimbo x

[BonnieT]

I have RA but also peripheral neuropathy in both legs. Like numbness, tightness and pain all in one. After years in my legs seems to now be traveling to my arms. Doctors don’t help me with the PN. I’ve been invited to a meeting in May with others who have it. Going with the hope of gaining information. Good luck to you.

[NeonkittyUK]

Hydrotherapy and free weights at home have heleod build up muscle for me which was lost for years. Good to know it can come back. It isn't as defined or strong as before but it is there. Hope you get your muscles back soon.

[MarshaM]

I was diagnosed with RA in 2013, and prescribed plaquinal. I had severe pain in knees, ankles and shoulders and muscle loss/weight loss. It was scary. I changed rheumatologist in 2014 and she said I had an aggressive form of RA and added MTX and Humira to the prescription list as well as one round of prednisone to bring down the inflammation. All the meds started to kick in once the inflammation was gone and I was able to move function and exercise normally again and gained my weight and muscle back. I get blood tests every 3 month to monitor my system and she saw me every 3 months for checkups. I believe she helped get my life back but she moved on the administration and no longer sees patients. You have to find the right Dr.