I have had chronic pain for years along side of these symptoms of PLS. At first the docs thought it was fibromyalgia, and thus that stuck for years. I was never able to get the pain under control using the methods that are the norm for fibromyalgia. Then they started saying it was perifial neuropathy. Yet that does not show evidence in EMGs and NCVs. So we are back to square one in reguards the exact cause of the type of pain that is continual, achy that gets worse when a muscle is pushed on or stressed through walking or use of everyday life. It is not necessarily related to my weakness because even though the pain came first it is recoverable somewhat with rest and mild massaging and medication occasionally. But the weakness came unexpectedly in one leg first and spread from there and unlike the pain it did not recover but has either remainded the same or had bouts of progression. The pain was body wide.
In regards to pain, I have learned that living at a 0 - 2 on a pain scale of 1 - 10 (10 being excusiating to put you in shock), is just not going to be in my life. I find that I can live at 6-7 without meds and still maintain a pleasant composure. If I creap up to a 7 I take ibuprophen, if I get to an 8 I take some form of a narcotic, 9 is a call to the doc for a toradol shot, if a 10 is achieved I am in the ER. I haven't had a 10 in about 6 years, since I have figured this out.
My pains are different too. I get sharp pain when I cramp. I get a tightness that exasterbates the achiness when I am overly spastic. I get the joint and muscle pain during pressure changes (including in airplane which will throw me up into an 8-9 if I do not premedicate before a flight, including for spaticity). I wake up each morning (and at night frequently) with screaming back pain not caused from mattresses, I have tried every kind of mattress out there...all with the same results.) The back pain might be aggrivated by what we found on the latest findings on my spinal mri that shows a few bulging discs (not effecting the spinal cord), mild scyliosis and some mild arthritis (also not effecting the spinal cord), along with the muscle cramps I get in the back since my back seems to be getting weaker.
All this pain gets complicated with the pains I get from tendons that rip when I try to do ordinary things that I cannot due because of weakness. Such as me really trying to open a jar and ripping all the tendons in my thumb, which in turn put me in a cast for 4 weeks and now I have to wear thumb braces because both my thumbs are out of place. The hand surgeon says I need surgery to take them in place. I will not be doing that anytime soon.
So like Beky states, the pain might be related to PLS, but an underlining condition of something else. Like fibromyalgia, neuropathy, arthritis...ect. I have been on neurontin for several years off and on. I am currently off it 2+ years now. It is a drug that is supposed to be an anti-seizure med, but has been used to treat anything from perifial neuropathy to fibromyalgia. I found once I got over the side effects of daytime sleepiness and weight gain, they actually worked for a while, but then the pain got worse again, so they upped the med. This is typical for this drug. I eventually would reach the max dose and take it for a while. Then when I built tollerance to that I would have to wean myself off it. Believe when I say this, comming off neurontin is a slow process and you do go through the DTs! I felt like I was coming out of my skin. Like the feeling of bugs was crawling on me that were not there and like I had a 3rd degree burn all over my skin to the point where even my own cloths hurt my skin. But this too passes (except for the bugs crawly thing, I still get that occasionally but not near as bad when coming off neurontin). I think both of my cycles of doing this were about a 5 year and then a 2 year before I would have to go off the med. This is just my experience and does not reflect anyone else. I have known people who were on half the dosage that I was on for 6 months before they decided to go off it and they did not have the extreme effects I did other than increased feeling like a sunburn on their skin.
So sometimes pain needs to be assessed to the point that if its chronic, you need to set the parameter you can tolerate without being unpleasant. A state of mind per se. Pain free is no longer in my vocabulary and since I have grasped this point for me I am happier. Because, even though pain is not fun, it is a fact of life for me. Pain meds were created to treat temperary pain. Not for long term pain. Thus our bodies get use to them and then they do not work anymore unless we take doses that will harm us. That is why I can go up to two weeks without ibuprophen or narcotics but have a pain level of 6-7. That is also why I can fracture a bone and not go to have it looked at for months. Like when I broke my hip and walked around on it 6 months before they discovered it.
(!)...I do agree that pain can vary - both in kind and intensity. My pain is complicated by the "restlessness" and "creepy crawly" feelings of restless arms syndrome (or RAS - I did say elsewhere that I have had occasional - and severe - RLS as well, although not recently - thank goodness).
