Not that long ago, my wife made it clear to me she thought I was suffering from CPS. It made sense, though I didn’t want to deal with another problem. I seemed to always be in pain, I was fatigued, and I certainly was miserable. She knew I had RLS and PLMD, but she also felt that maybe my CPS was hiding underneath – kind of like I have discussed how I feel my RLS and PLMD was hiding under athletic pains and in other ways.
I don’t know a lot of about CPS, but I know it is considered a confusing, misunderstood, and even silent problem. There are no clear signs of it and there are no treatment plans known to absolutely work. Those with CPS certainly suffer and probably are treated for all kinds of other disorders, diseases, and symptoms before anyone thinks to look at CPS as the cause.
While I don’t know if I have CPS or not, I can say the pain and discomfort my RLS and PLMD seem to have caused is similar in nature. Everyone was looking elsewhere. Chronic patellar tendinitis, depression, insomnia, etc. So, why not add a challenging condition to the mix and see where it would take us.
What is difficult for many people to appreciate is just how much pain I am in when the RLS is either wasn’t being treated, there is a lapse in medication (for varying reasons), or it is just acting up that particular day (or in the case right now, I am being tapered off my medication). Many people know there is the 1 to 10 scale many doctor’s or emergency room staff will ask when someone comes to visit. I don’t know the last time I selected a number below “3.” I usually answer around “5” or if I am having a tough day closer to “7” or “8.” I then usually have to explain the number to my doctor or person taking my history so they don’t think something else is going on – and I am not going to lie on the forms, either … it’s part of my medical and physical make-up.
Prior to be diagnosed with PLMD and then RLS, I was always in discomfort. Whether it was patella tendinitis or something I didn’t know… I was in pain. In hindsight, it’s what kept me up at night, it didn’t allow me to get comfortable on a couch or chair, and it could affect my concentration and focus. Also, I am sure there was many a girlfriend who was disappointment I couldn’t cuddle, feel comfortable lying in bed, etc. I didn’t know why, but I couldn’t do any of those things. My wife has gotten used to that fact, but I know she wishes otherwise.
Most of the time, the pain and discomfort keep me from relaxing when I need to relax. I would love to sit on the couch and watch television at night… but usually I am constantly moving or have to stand and either pace or rock back and forth on my feet. It’s truly annoying.
What’s worse is when you feel it coming on. Before I started tapering my medication (with hopes of a new plan of attack), I experienced a few things that would usually indicate I was going to have a rough period of time:
- If my pain and discomfort started acting up in the early afternoon, before my first dose of medicine, it was already too late. Even with the medication in me after that point, I wasn’t going to have an easy night. The key for me was to take the Gabapentin before the pain and discomfort set in but not too early that it wore off later before my second dose. I usually aimed for 5pm and set an alert on my phone accordingly. However, I sometimes wouldn’t take the medication until later because if I was comfortable and wasn’t experiencing discomfort. In other words, I was playing roulette with my RLS and more times than not the RLS won. The only way I could make sure I didn’t miss a dose was to have some medication in my car, in the pool bag (during the summer), in my backpack, and in the kitchen. The only place I didn’t end up putting it was in my home-office… something I should have done.
- Speaking of medication… that cocktail especially prior to bedtime was very important. If I missed even one of the medications or I didn’t have any of them (as I have described in other blogs), I was screwed. Usually the clue something was wrong would come when I was either very tired, but couldn’t get comfortable. Or I was comfortable, but wasn’t very drowsy. Each of those usually indicated I forgot to take one of the meds or both (read this blog as to why I might miss medications).
- Not much helped relieve the pain and discomfort except moving around. I could stretch, take a walk, massage my muscles, etc., but once I stopped… it would come back. It sometimes has gotten to the point that my feet start hurting from the amount standing around that I do. I would even try and wear myself out (nothing beats softball during the summer) in hopes my body would calm down… but that didn’t always work.
- There was absolutely not correlation to a good night’s sleep one night to it being good the next. I will say a bad night tended to run into another bad night, but that was also because a bad night would trigger more anxiety of whether I would have a repeat. So, if I was going to struggle with pain and discomfort and I needed sleep (and had plenty of time to recover the next morning), I would go with what I called the nuclear option and take 15mg of Flurazepam.
- When I am in pain and discomfort, it is hard to not let everything affect me. I know my nerves are on edge and thus even stupid things can bother me. There just isn’t any way around it and as much as I tried to keep the little things from bothering me… sometimes I would lose the battle. I know I am probably not the most enjoyable person to be around when I am in discomfort and thus I know it can be hard on other people.
The really hard part – how do you explain to people what you are going through when there is absolutely nothing they can compare it to themselves. This is where I can relate to someone with CPS. If someone asks me how I am feeling, I usually put on a brave face and said fine. There has been NO point in trying to say I am in pain, I am not comfortable, I am miserable and have them understand and have any kind of sympathy. It only gets more challenging when you try and explain why you are in pain, not comfortable, and are miserable when they don’t understand the ailment either.
It also takes a toll on my kids… which I know isn’t fair. My son is incredible because he sometimes knows when I am not feeling well (especially during the tapering) and comes over and gives me a hug. My daughter is starting to catch on. The problem is when they are acting up and I am not in a great mood… sometimes I have to walk away or it gets the best of me.
That’s what I mean by the pain and discomfort can be all encompassing. It affects every part of me. It has affected my work and jobs, my social life, my family, etc.