Muscle wasting and lack of grip strength.
After any suggestions for things that might help to slow the progression of this problem. Two years ago when I was detailing my then current daily ‘challenges’ to my rheumatologist at my 6 monthly ‘in person’ appointment (we do telephone appointments 3 monthly in between the in-person appointments) I said that I was aware that my grip strength had deteriorated further and the lack of strength in my fingers meant that even opening plastic packaging was often beyond me and I had to resort to using either scissors or the help of a 3 year old grandson! She looked at my dominant hand (I am right handed) and said “oh yes, you’ve definitely got muscle wasting particularly in your right hand”. I was then sent to an appointment for ‘Nerve conduction’ testing and a repeat MRI of my C-Spine as holding anything in my hands- like a phone - results in first
pins and needles and then complete numbness.
The problem is that my hands and feet were the first place affected and now I’m into my 5th decade since this started I have considerable deformity in my hands (and feet). I now have the added joy of osteoarthritis at the base of my thumbs and my hands look like those of a 90 year old - and not in a good way!
I recently saw a specialist in hand scanning who entered the room and said from 12 foot away “goodness, I can see from here that you have a lot of joint damage in your hands for someone who is still young”
My problem is that especially first thing in the morning, apart from doing some gentle ‘range of movement’ exercises my hands are simply too sore to do anything that involves trying to increase the strength of my grip. I frequently drop and smash cups, plates etc as, in gripping to pick them up I will have a sharp stab of pain and my hand reflexively opens dropping the item 🤷♀️
I use cups or mugs without handles so that I can use the palms of my hands to hold them and am gradually going over to ‘unbreakable ‘ items but am resistant to using anything that looks ‘institutional’ or like it should be on a hospital rehab ward. I find that metal ‘keep cold’ drinking water bottles bounce well when dropped without leaking and I drink my coffee from a travel mug with a lid in the morning.
Any suggestions for slowing further decline would be much appreciated😀
Plus any suggestions for adapted devices that don’t look institutional would be really helpful.
Thanks,
Cece xx
Hi
. I wish that there were any easy answers. The two main things are controlling RA the best one can (I know, I'm not saying anything you don't know here) and a lot of effort to maintain strength and mobility. Our patient leader Kat, who was diagnosed at age two and is also an occupational therapist wrote this article on tips to improve hand strength: https://rheumatoidarthritis.net/living/stronger-hands-exercises. My wife, Kelly (as you know, also diagnosed at two) does a lot of therapy and many of the things I think you are aware of - splints, resistance band exercises.
Your mention the pins and needles, so it certainly makes sense that doctors were testing for nerve issues (see Wren on neuropathy here: https://rheumatoidarthritis.net/living/fraying-nerves). Have you heard anything yet about those tests or from hand specialist? Hopefully others have some thoughts. Also hoping you get some answers and relief soon. Best, Richard (Team Member)thanks for those links. Yes the nerve conduction tests on the muscle movements in my right arm through to my hand confirmed a marked difference between my right and left hands.
The C spine MRI showed further deterioration in the vertebrae and posited the theory that when I’m flaring and there’s inflammation in my neck the nerves get pinched causing the pins and needles.
Unfortunately I am in the position of being between a rock and a hard place with active treatment of my RA as after decades of Dmards my immune system keeps on going ‘uh oh, no’ and dumping me into neutropaenia which means stopping treatment until my immune system recovers. I also have ongoing problems with very low IgA and IgM causing me problems with recurrent infections - everything from kidney infections to dental abscesses!
I had a review with a Prof Rheumatologist in the research team who’s opinion I respect who concluded that it’s too risky for me to be treated with either Anti-TNF or the newer Biologics as I have a complex history with kidney disease and two severe episodes of Sepsis that put me in the ICU.
So it’s just a case of making the best of it on what my body can tolerate which is currently low to moderate dose DMards.
Thanks for your reply I really appreciate how vigilant you guys are about the posts on here and responding to them. Wishing you all (including Kelly) a Happy New Year and Good Health and Happiness in 2025!
I'm pretty sure that I have read - although my husband would add that sometimes I make things up 😀 - that RA can cause muscle loss. I could offer my left foot and ankle as exhibit A. When ex-rays and MRI's were compared, the radiologist noted a loss of muscle in the more current imagings. In just living on this dreadful ankle, I think its true. I feel an instability in the darn thing. Because of pain, getting the strength back through PT exercises is a challenge. My therapist's goal for me has been to keep the ankle joint moving with exercises that don't force me to bear weight on it.
Hi
and . Muscle wasting and loss with RA is definitely real. This article, in which a few rheumatologists discuss managing muscle loss, notes that 43% or RA patients experience it: https://www.rheumatologyadvisor.com/features/rheumatologists-discuss-management-of-muscle-loss-in-rheumatoid-arthritis/. There is also something called cachexia, which involves a loss of muscle and often fat as well. This article goes into further detail: https://pubmed.ncbi.nlm.nih.gov/12163213. Hope this information is helpful. Best, Richard (Team Member) 
Hi and thank you for taking the time to share your experiences and thoughts. RA can cause muscle loss and I've noticed this even with myself. Though what can be the culprit depends on the person. For me I noticed it more when my RA wasn't under control, or even a side effect from medications. When I started methotrexate I lost weight and muscle mass. Contrary to what my rheumatologist says, this doesn't or shouldn't occur...but that is all relative because it was the only thing I added into my regime. Aside from that there's underlying root causes that can bring forth muscle loss too i.e. lack of physical activity due to flares and limited ability, nutritional deficiencies. Muscle weakness is also common and is referred to as “rheumatoid cachexia” -Effie, team member
