PA’s Diagnosis

[Stainless]

Every other time I go to Neurologist I see his PA. Both have heavy accents so communication is not great. Not surprising since a third of US docs are foreign born.

Anyways the PA tells me my pain that I take Lyrica for is the deterioration of the muscle in my thighs from repeated jerking day and especially night. It is the most logical but scary diagnosis I’ve got yet. No other doc has come close to saying this. Every other doc implied it is just part of RLS.

50 plus years with RLS but the pain in thighs did not start until I got off Clonazepam for a year about 6 years ago. It was a horrible year on the DAs. Never had pain before, just Jimmy legs. The pain comes and goes which and seems to me to be neurolical but I guess everything is.

Clonazepam takes a big bite out of daytime RLS somehow. I take it with the Lyrica right before bed. The combo knocks me out for a while but I don’t think the Lyrica does a thing for pain. Now I use the hot tub 2 or 3 times in the evening, exercise and a little night walking that makes things tolerable.

So I’m just curious if anyone else has had this diagnosis of muscle deterioration? Does not bode well for the future. Any comments or suggestions?

[Rustsmith]

To be honest, this sounds like an unsubstantiated guess by a PA who didn't have an answer and was afraid to say "I don't know". I could see that muscle soreness could result for a while from nighttime twitching but not deterioration. If muscles deteriorated due to constant twitching at night, then the muscles on every long distance athlete would be totally atrophied and highly painful and not built up and itching to get back to training.

[Polar Bear]

Exactly what Steve said..
My immediate reaction to the PA was......what nonsense..
I think you need a different doctor.

[badnights]

Same same! I agree with the others. Sounds like an ill-considered remark off the top of his/her head. What actually is deterioration of muscle? The term implies some kind of abnormal destruction of tissue; to detect that, they would have to sample the muscle itself, wouldn't they? But as far as I can find out, the term simply means muscle atrophy, which is not likely to arise from jerking legs. Well, whatever the medical use of the term, the PA had no evidence to back it up so it seems to have been just a thoughtless remark.

[Stainless]

I have an appointment with another neurologist this month. Told my GP I was dissatisfied with neurologist's communication and 10 seconds later had a referral to someone else in network. I'll ask him about the PA's comments on deterioration of the muscle from long term RLS/PLMS. I hope to improve communication but need assurances I can continue on Clonazepam until we can get something else working.

I wake up almost daily with pain in my thighs like I ran a marathon without training. This didn't happen the first 50 years of RLS. Can't imagine next 10 years.

[Titanons]

My husband has been on mirapex for many years now and is now suffering from augmentation. He has been taking total of 4mg a day which I just learned from reading posts here that the max dose should only be .5mg a day. But like you, he has been complaining of pain on his thighs and the back of his knees. His latest blood test showed a high level of creatine kinase which I googled and learned that this usually due to muscle degeneration.

[badnights]

Wow interesting convergence of your husband's and Stainless' experiences. Your husband is lucky to have you researching things for him.

Have you read about the importance of iron? WED/RLS is essentially a deficiency of iron in the brain. There is no easy way to measure this, but if the concentration of ferritin in his blood is below 50, he has iron deficiency somewhere. (Unfortunately, many things that have nothing to do with WED/RLS can make ferritin go high (inflammation, infection), so high ferritin is basically meaningless.)

WED/RLS patients need to keep their ferritin over 100. Ferritin is not usually measured in iron panels; your husband needs a doctor who understands WED/RLS or can learn about it, and he should get an iron panel with ferritin. His goal should be to get off the ropinirole but he may need to taper first. As he comes off it, he will need probably an opioid medication to stop the symptoms, which will be even worse than they are now. But after a couple of weeks, the symptoms will be better than they are now, since the aggravating substance - Mirapex - will have been removed and his body will have begun to recover from it.

He will need a lot of support to do this. It is a journey into grievous torture - and back.

[sarahpatto]

I read these posts about leg pain with interest. I am an active person, biking, swimming, Pilates, etc., and I am familiar with muscle soreness. But ever since RLS kicked in with a vengeance about a year ago I have constant soreness in the back of one leg in particular - as if I pulled a muscle. This muscle soreness doesn't go away even if I don't do anything for a while. Is there some connection with RLS and sore muscles?

[Rustsmith]

I used to train for and run both marathons and compete at track (mostly after age 50) and never had any muscle soreness that I would attribute to my RLS. The pain and soreness that I had was always due to some sort of over-use problem or injury that occurred during running. But I can tell you that when I had a relatively severe hamstring pull, it took about a year before the pain finally went away and I regained the strength due to that injury.

So, my suggestion would be to talk to a sports medicine professional and ask if they can help.

[Dr.Placebo]

2 more cents on the subject of "muscle deterioration." If that were actually happening it would be a serious problem, called rhabdomyolysis, and a blood test called CPK would easily detect it and be very elevated. Don't bother getting the test because the PA's diagnosis is, as had been said, uneducated, and very unlikely, not to mention an irresponsible dispensing of misinformation.

[Rustsmith]

I had rhabdomyolysis during a marathon as a side effect of a med that I was taking for migraine prevention. The thing that worried me was that my urine turned VERY dark brown. Fortunately, the problem disappeared after the race (this occurred twice) and never occurred again after switching meds (to gabapentin).