KDecker1612 wrote:Hello everyone. I'm new here. Eefall, I read your saga with intense interest. I am 49 years old. I have had RLS/WED for over 20 years. At first it was occasional, but then it became severe, every night. My doctor referred me to a specialist, who put me on Mirapex, .125mg. It was a miracle! No side effects that I could tell, and peaceful sleep every night. That lasted for several years, then I gradually had to increase the dose. We also added gabapentin. I discovered I had to limit the amount of gabapentin because it makes my ankles and legs swell, and made me groggy. But it did seem to help. But like you, I eventually augmented. I was taking the maximum dose of 4mg of Mirapex, 900mg of gabapentin and klonopin, don't remember the dose - and it wasn't working. I ended up going on a drug holiday for 2 weeks. Quit everything cold turkey for the first week, then tried some gabapentin alone in the second week, but it didn't seem to help at all. I was just like you, on my feet nearly 24 hours a day. I cleaned, danced, played darts, and paced, paced, paced. I sat down for about 5 minutes every few hours, and slept about every third day for about 1 to 2 hours. It was hell. I was working a desk job at the time and couldn't afford to be off work. I had to stand at my desk and do squats just to get through the day. It was hard to concentrate. I was so exhausted!
At the end of the 2 weeks, my doctor put me on Requip. It never worked as well for me as Mirapex, but I stayed on it for a year. Then I switched back to Mirapex - and it was a miracle again. That was 6 years ago. For the last year, I have been on .5 mg of MIrapex, but it's getting worse. I'm beginning to augment again. I've had to increase to .75 mg a day and I'm having symptoms during the day. I'm getting it in my arms more now too. I wake up a lot and sometimes have to get up and pace for a while during the night. I don't have insurance now, so I can't afford to go to a specialist. I have a script for gabapentin, but I really don't want to go back on it.
I'm scared, plain and simple. I don't want to go off my meds again, but I know that before too long the Mirapex will stop working again. I'm glad I found this site so I can talk to people who truly understand how horrible this condition can be. Thank you for sharing your journey! And thanks to everyone else who posts and shares ideas and suggestions. I'm going to look into some of the supplements and things some of you have tried. I know that everyone is different and what works for one won't work for someone else. I was interested to hear that lying on your stomach helps you - I too have to lie on my stomach. If I try to lay on my back, my legs will go crazy within minutes. Sometimes I lie on my stomach and put something hard under my thighs, putting pressure on it. It seems to help a bit. My boyfriend has learned how to massage my thighs to get the muscles deep inside to roll. Sometimes it helps sometimes not, like a lot of things we try. Just interesting to know I'm not the only one.
Keep posting and keep hoping!
KDecker1612,
Thanks for the post. To tell you the truth I had thought of just not coming back to this site at all because I have been feeling so bad the last few days. I thought maybe if I just tried to stay away it would make it better somehow. Pretty strange reasoning
but then I am a pretty strange guy living a pretty strange life with this bizarre disease. I am glad you got something out of my posts, that is the main reason I do post in the hope that others will know that they are not alone in this, especially the ones who are almost in new territory their symptoms have become so brutal.
The doctor has just put me on 50 mg of Lyrica (yeah, the same stuff that gave me most of the terrible withdrawals getting off the 300 mg a day I was taking). His reasoning is that because the gabapentin is giving me severe side effects including making me mean-as-hell and giving me stomach cramps that starting me on the smallest dose of Lyrica may do the same thing as gabapentin (make me sleepy) but without the terrible side effects. I took 6 times the dose and it didn't do either of those things to me before so hopefully it will work. This is my first night taking it along with my 10 mg of methadone at night. I also still take 2.5 mg of methadone in morning and afternoon.
The other day my wife calls me up at work after her doctor appointment checking out her leg once again. She broke it 4 months ago a couple of inches up from the ankle. It has still been hurting her so they did a CT scan. She says, Why haven't you answered my texts!". I hadn't noticed that I had gotten any so told her I would read them. My God! She had written me 6 texts telling me that they have to re-break her leg and put in metal plates and bolts. She will be out of work for at least 4 months. I will have to stay home and take care of her for at least part of that time.
We are living by a thread financially now. I have missed months of work that the insurance company denied my benefits, no leave of absence pay, my wife has already been out of work a couple of months because of her broken leg and now another 4 months and while she was supplemented a little cause she had sick leave this time she has none. For the first time in years with had a NSF in our checking, thank god that our bank paid the mortgage payment (which would have bounced). That is how close we are living now financially, week by week. We have spent all of our savings in the last couple of years just making up for all the months, actually over a year of wages that we never got, then there are all the medical bills and the $2500 we spent to go to John Hopkins. I purchased our manufactured home in a retirement community last year about this time because I knew that my health was becoming very unstable. That is turning out to have been a very good decision.
So I am mentioning this because it is yet another part of Restless leg Syndrome/Willis-Ekbom Disease and also the complications of having Sleep Apnea too. It is a complication too of becoming older with this disease. If I were still healthy my wife's broken leg would have been like many folks, almost a normal inconvenience that happens in life, but I can barely take care of myself. This is selfish I know, but the added stress of this will disrupt my life which will have an impact on my WED, it just will. I know this from living through similar circumstances. WED doesn't just effect me physically. It effects me physically, psychologically, emotionally, and now it is even effecting our standard of living.
I held out little hope for this last ditch effort to find a solution for my severe WED. Then it seemed to work and I started making all these grandiose plans of how I would start living life as if I were normal again. I was elated. Then the bumps began, even the first week back to work I had to miss a couple of days of work because of lack of sleep. I found that the methadone at 2.5 mg in morning, 2.5 mg at lunch, and 10 mg in the evening stops my RLS symptoms completely. Then I realized that because of the hyper-arousal of methadone that it didn't mean I was going to sleep too. I needed something that would make me sleepy too. Gabapentin worked, I was again elated, at least it worked to put me to sleep, but the side effects changed my personality to become angry all the time and it gave me stomach cramps. So now it is Lyrica again. Who knows how that will go. I swore (swore!) that I would NEVER take Lyrica again. The withdrawals were a nightmare (and it will never totally leave me) and now I am back on 2 of the 3 drugs I got off of?
The only silver lining (so far) is that I am off the DA Mirapex (pramipexole). I'm not going to swear anymore. I still have a box full of pramipexole, no way am I getting rid of it. It may be my last hurrah. If everything stops working, and it could, it just might be the last medicine I take which would be somehow ironic but it would fit this bizarre existence.
I started off as a little boy who had to have one foot out of the covers at night and wiggly my toes...I think that was the first symptoms, if so I was born with this and have always had it, but with age it gets worse. I keep thinking (maybe the human mind is an optimist) that it can't get any worse - wrong, wrong, and wrong. The one thing we don't know though is if there will be a cure tomorrow, there is always the possibility of a total cure. I daydream sometimes when I think of just ending it (yeah I have morbid thoughts) that I do end it and the next day's newspaper headlines will say
Cure for RLS Found! and then my obituary will be on the back page.
As Simon & Garfunkel lyrics are written:
So I'll continue to continue to pretend
My life will never end,
And flowers never bend
With the rainfall.