Severe Leg Muscle Tightness and Pain

[lab]

Hello everyone. I am a new member here. I was diagnosed with primary WED and PLMD 16 years ago. I am one of those people who has had this since I was a young child, and did not get diagnosed until well into adulthood. The first medication I was on was Carbodopa/Levidopa and I thought my life had been saved. It was the first time I slept through the night since I was a young child. Unfortunately, like many, I developed augmentation, and have since been on several different drugs. I am currently on Gabapentin. None of these work quite as well as the Carbidopa did while it was working, but the Gabapentin is better than others I have tried. My symptoms are not due to an iron deficiency. I've had extensive blood work done that has ruled that out. I work hard to control my symptoms as much as possible. I avoid alcohol as much as possible as that makes the WED become unbearable much earlier in the evening.

The biggest issue that I have is that my calve muscles are solid, very tight, and very painful. Walking on a flat level for one mile is painful. Walking up even a slight incline is pure agony. I'm convinced that the muscle pain is related to the WED and/or the PLMD. I've tried everything to help. Stretching, yoga, massage, acupuncture, advil, and more. Last year I broke my arm and was on narcotics for a short while, and it was the first time I can remember that my muscles didn't hurt. I don't know if that was because I just didn't feel the pain, or if it actually relaxed the muscles. But I don't want a solution that involves taking narcotics regularly that is for sure.

I think that my doctors think I am just whining about this, or using it as an excuse to avoid exercise. The standard answer is to stretch. Believe me, if stretching fixed the problem, I'd be doing it regularly. I feel that I can't get good exercise without a lot of pain. I would really like to find a solution to this. Does anyone else experience this? Or is it completely unrelated to the WED and PLMD?

[Polar Bear]

Welcome lab. I have never experienced the tightness and calf pain that you mention. However, we do know that WED symptoms can present themselves in various ways, including pain as opposed to the creep crawly sensation.

A friend of mine had symptoms similar to those that you describe but his was caused by long term smoking and when he ceased smoking the pain in his calves receded. He never suffered from WED.

Perhaps you will hear differently from other members.

[ViewsAskew]

It sounds miserable to feel that way. I haven't experienced that, either. I haven't any insights to help, either.

Welcome to the board.

[jul2873]

I have been getting some leg pain lately when I've been walking, but I put it down to not exercising enough. I just got a treadmill and plan to slowly increase my walking to see if i can do it without pain. Or maybe I'll join the Y again and start swimming again. I didn't get any pain when doing that.

Also, I take Kratom (a mild, non-prescription opioid) during the late afternoons and evening which may be controlling the pain to some extent, although most of my walking is in the earlier part of the day. I'll try walking later and seeing if the kratom controls the pain.

It depresses me to think this pain is yet another unpleasant aspect of WED, although it probably is.

[lab]

Thank you everyone. I don't smoke, so that is not an issue. I get the double whammy of the creepy crawlies from WED and involuntary leg movements from PLMD. I believe that the contractions from the PLMD is what causes the muscles to be tight, but I don't know for sure. It can't simply be from walking, as that is very gentle exercise. My calf muscles are always really really tight. If I get a massage, they always say that the muscles are so tight there is little they can do about it.

I'm going to see if I can get to a doctor that knows WED and see if they can help. I spent 4 years in Australia and could not find an expert there, but I have found one where I live in the U.S. now.

[Rustsmith]

I often have WED issues with my calf muscles getting tight and feeling like they are about to cramp. However, this only happens when I am in bed trying to go to sleep. I can stretch them and get some temporary relief. But unlike you, I do not have this problem during the day. I am a competitive runner, so my calves get a lot of work and I stretch them regularly to keep them from tightening up.

Your issue might be a side effect of the WED and PLDS. I know runners who do not stretch and have muscles that are so tight that they risk injury. Maybe your calves have been getting so much work during your sleep that they have tightened up on you. For runners, the treatment by the physical therapists is simply regular stretching to lengthen the muscles. Therefore, one option that you might ask your doctor for is a referral to a physical therapist who can work with you on how to properly stretch them to lengthen the muscles and loosen up your calves.

[Sojourner]

I'm a bit late here but… Leg pain, electrical shock sensations (legs), and, most recently, calf pain along with the sensation of cramping, popcorn popping or water bubbles rising to the surface are my current "sensations" or choice. The creepy, crawlies are long gone. With regards to the calf pain… The feeling is that of having a "charley horse" or spasm but without the charley horse or spasm. My calf does not feel tight and is actually quite relaxed and malleable. I'm not sure that the popcorn popping or water bubbles represent benign fasciculations or a parathesia. I have had fasciculations before (stomach area) and they were easily visible (and in the end I believe wee a direct result of the Klopin I was taking). These sensations are not visible. But, they are like the "chinese water torture" and drip by drip by drip the end result is lots of pain. I do not have the calf pain/sensations during activities but just when resting. They are relieved by movement but the longer they last the longer it takes to quiet things down and for the pain to lessen.

So, it seems that while my calf symptoms are somewhat different than your symptoms we as well as our symptoms come in all different sizes, shapes, and flavors. I am currently titrating off of gabapentin. I have some opinion that the gabapentin is/was responsible for some of my symptoms but am still working on the hypothesis.

For me, the electric shock and mini anxiety/panic attack that comes with each shock is by far the worst and currently the most debilitating symptom of my WED. But, tomorrow lurks.

I hope you can sort out some of your symptoms. As I have mentioned before, I am grateful to have a doctor who is sympathetic, patient, caring, and does not give me the "raised eyebrows" with each new complaint.

Wishing all here some peace this night.

[badnights]

I am not sure if your muscle pain is related to the WED, but it could be, as others have noted. You might be tensing up your calves while you sleep, as a response to the WED sensations, or you might have particularly vicious PLMSs.

Physiotherapists deal with tight muscles. I have a friend who has what sounds like the same thing, only it's his quadriceps. I can't say he's found complete relief yet, but the type of professional who deals with this is a physiotherapist.

Also, you may perhaps benefit from going to a pain clinic. If you need a referral for physio, a doctor at teh pain clinic might be able to do that, or your general practitioner.

If opioid medications* allow you some relief, that might mean that the tightness is indeed from tensing the muscles in repsonse to WED while you sleep. The opioid would remove the WED sensations and therefore the need to tense up. If they relieve the pain, think carefully about what a pain-free life and good sleep means to you, then research carefully what the chances are of negative consequences like addiction (low) and constipation (can be dealt with by diet).

* By the way, narcotic is not the right term. It has legal and regulatory connotations of harm and illegal activity. It is used by government and law agencies to refer to illicit drugs or improperly and harmfully used drugs. Some of these illicit drugs like heroin are opioids, but others like cocaine and methamphetamine are not. The proper medical term is opioid analgesic, or more informally, opioid pain-reliever. (The word opiate exculdes the synthetic varieties, so opioid is the more inclusive term for this class of meds.)