opinions wanted

[jebsat]

I would love your opinions...here's my story...I was diagnosed with RLS by my GP who although she's great as a GP, probably doesn't know alot about RLS, because who does? My symptom is pain...much less restless than pure pain in my shins and front of my calves. I don't have the urge like most of you to get up and walk around at night but I do wake up and have the urge to flex/stretch my calves. I sleep but I do take a small amount THC/CBD every night. My physical therapist said my front calve muscles are "hypertrophied."

I have had the following tests and they were normal... fasting iron/ferritin in the morning, a vascular scan, xrays and just recently an MRI. The MRI showed "mild" muscle strain which i'm guessing the average person would have if they work out, which I do.

I went to a recommended new neurologist who was said to be knowledgable on RLS- she ordered the MRI. She doesn't think I have RLS and just said to go to physical therapy. I"m not saying she's wrong but I just feel that it is some version of RLS. Why would it primarily be at night and not continual if it were a muscle strain? And the pain is symmetrical. She was not interested in pursuing my case any further.

I've been avoiding meds since the gabapentin made my legs worse and put at least 10 lbs on me which i'm struggling to lose. (oh also new doc said "it can't be RLS if the gabapentin didn't work" which we know is nonsense) Accupuncture helped but its too expensive and not convenient to where I live.

Any thoughts on what to do next? I guess I"m willing to try another medication if it doesn't have many side effects. Are there any other tests you would recommend?

Does this sound like RLS to those of you who have lived with it and/or are very knowledgable? My mother did have RLS, but it was restless, not pain like mine.

thanks in advance!

Lauren in Maryland/US

[SueJohnson]

I would suggest your see Dr Christopher J. Earley at Johns Hokkins. He is with the Quality Care Center one of only 12 in the US for RLS and he is one of the best doctors in the US. Do Not see anyone else as he is the only one you want to see there.

[jebsat in reply to SueJohnson]

Thank you! I will try and get an appointment!

[FuchsiaFlower in reply to jebsat]

I developed RLS after knee surgery seven months ago . Initially I had severe knee jerks. I was prescribed gabapentin but never took it , instead managing with codeine phosphate , paracetamol and magnesium glycinate. Over the months my knee jerks have almost disappeared but I am left with what you describe , pain in my calves and an urge to stretch my legs . This only happens in the evening and during the night . I now do a series of exercises for RLS before bedtime and find these help to relieve my symptoms.

I do hope you get some resolution. I consider myself very lucky to have only suffered briefly .

This forum kept me so informed and sane during my darkest moments. Thankyou

[4Curiousosity in reply to FuchsiaFlower]

Wow, mine started the same exact way after a TKR then severe leg spasms so bad that I was left with Arthrofibrosis in that leg. It took more surgery and 365 days of PT 3 times a day to be able to walk again. Drs said they’d never heard of spasms after knee surgery and are afraid to fix my other knee because of it.

I’d love to know what exercises you do that help?

Mirapex helps, but I’m so afraid of augmentation that I’m using Buprenorphine (that I was given for chronic pain before) and luckily really helps RLS

[FuchsiaFlower in reply to 4Curiousosity]

Your post op experience was so much worse than mine . The exercises I do are leg stretches . I found the info online . I was told the knee jerks were a result of nerve damage during the TKR op and would resolve as the nerves healed . Indeed that is what has happened . I still do the stretches before bedtime as they settle my legs .

[jebsat in reply to FuchsiaFlower]

I forgot to add that mine began after ACL surgery also.

[tiffanie125d in reply to jebsat]

Call to get an appt quickly. My husband waited 11 months for the initial appt with Dr Earley. He still sees him as they are trying g different things. Great doc

[Joolsg]

The urge to move is the top diagnostic tool. You don't have that. So it doesn't sound like RLS. But you need to find out what it is.I agree with SueJohnson. See the top guy near you.

[jebsat in reply to Joolsg]

I do have the urge to move but not to get up and walk although that would help. I have the urge to flex my feet/ankles/calves and do so when I wake up at night.

[Munroist]

If you walk around does it relieve the sensations? People report a wide variety of symptoms with some suffering more pain than restlessness, but the need to move is normal, as is getting relief once you move. Does walking relieve your symptoms?

Do you run? Shin splints from running can present in a similar way, often easing when you move but then painful when you get up after rest.

[jebsat in reply to Munroist]

I do get relief from movement. I don't run but I walk a few miles , a few times a week. I was even prescribed prednisone for shin splints and the pain disappeared for a couple days but then returned.

[SueJohnson]

If you can't get an appointment soon with Dr Early, one of the ways to test if it is RLS is to take .50 mg of ropinirole for just a couple of days. This should relieve your symptoms if you have RLS. If not, then you don't. However if it does DO NOT BE TEMPTED to continue to take it as it will lead to augmentation and it can be hell to come off it.

[jebsat in reply to SueJohnson]

After gabapentin, I took Ripinerol for a couple weeks with no change.

[SueJohnson in reply to jebsat]

Then you don't have RLS.

[Munroist in reply to jebsat]

I’d agree with Sue. Based on your other responses and your lack of reaction to Ropinirole it doesn’t sound like RLS.

[Merny5]

I too agree with Sue