I found this forum while doing a search for more information on fibromyalgia, fm rx's, side effects, and other topics.
I was first dx'd with fm 2 years ago after my gp referred me to my rheumy when I was seeking information on why I was always exhausted and ached constantly. It was depressing. Still is a lot of the time.
My family thought I was just being lazy, or trying to get out of things. My husband was constantly telling me to get out of bed, that I slept too much, and got aggravated when I told him it hurt for me to do little things. My daughter thought I was just being lazy, or didn't want to help her with things.
Being dx'd helped to get my family to back off and shut up harrassing me when I said I was tired, or ached. It really hit home and got through to my husband after my first appointment with the rheumy when she did the tender point tests and in less than an hour I was in so much pain it was difficult to walk, and I was literally bawling in the stores as we ran our errands. I'm not one to cry over anything in public, yet I was reduced to tears. My husband had never seen me in so much pain and it really woke him up to what I am dealing with. Since that day, if I say I'm too tired or I hurt to much he is so much more understanding.
I have also been diagnosed with ibs, osteoarthritus, carpul tunnel, bone spurs and a neuroma.
The rheumy started me off right away on Lyrica which showed some benefits, a few side effects, but was just not enough on it's own to tackle my fibro. Side effects were dizziness, dry mouth, balance issues (which I already had, they just became more of an issue), drowsiness, irrability, and what I refer to as "tunnel vision" because I felt as if I was stuck in a tunnel and could only see a certain area.... like I had those blinders on they put on race horses) I didn't feel safe driving. The max dose I was put on was 150mg 3 x day. I chose myself to cut out the 2nd dose mid-day because the side effects were just too much for me to deal with at that doseage. Yeh, that means more pain but less side effects.
I was also put on 1000iud of D3 a day because my vitD level was about a 7. I have to continue to take the vitD in order to maintain an acceptable level.
After a year of being on the Lyrica, I hit a level of the most pain I've ever felt making it difficult to walk across the floor. Sitting, standing, laying, everything hurt! Even my clothes hurt. I was waking up in pain in the middle of the night. This is when the doc tried me on tramodol. I didn't last 2 days with it. Within 20 minutes of taking it, I was puking for the next couple of hours. Doc changed it to nortriptylene and built up the doseage so I now take 100mg of it every night before bed. As soon as Savella was available on the market, my rheumy added it to my rx's.
Savella has, for the most part, given me my life back. I just this week had to take 2 days off of work and spent those days in bed because of the pain. It's the first time my pain level has been as dibilitating as this since I started taking Savella.
I am concerned and have been looking for information linking my current meds to what I believe are photosensitivity seizures. I have never before had a problem until about 8 months ago when flashing Christmas lights made me feel very disoreinted, like I was moving in slow motion, stuck in a strobe light. I know no other way to describe it. Recently at work, a flashing/flickering lightbulb which was going out had to be turned off completely until the boss could replace it because I felt as if I was severely druck if I looked anywhere near it, which could not be avoided. Once it was turned off, I felt fine again.
I have a call into my rheumy after having to miss work and spending the weekend in bed. She's told me previously there is nothing more she can do for me or rx me, that I will have to come to acceptance and learn to work around my fibro. But I can hope that in the 3 months since I've seen her there is something new to consider. I should mention, she referred me and I was accepted to the Mayo clinic's pain rehab center last year. I couldn't go. Even if the insurance would help, I can't afford it.
I had bone spurs removed last October from my toes which were causing severe pain. It hasn't even been a year, and they are back along with what my podiatrist tells me is a neuroma. I have tried cortizone shots, which lasted less than 2 months in providing relief. Recently I have been applying Voltaren gel (which my rheumy had rx'd for use on my knees, feet and lower back which didn't seem to provide any relief there) to my feet at least twice a day. I have found some relief doing this and will continue to use it. I will have to ask my doc to write a new rx for it though as I hadn't had it filled in months since it didn't work for the original use she rx'd it for. Podiatrist says my only other option is another surgery on my feet which he won't do unless I agree to take at least a month off from my work schedule. Not an option.
The economy slump has really hit home for us when my husbands work cut out over a $1000 of his work income a year and a half ago and has no immediate plans to return to that pay scale. Another job for him isn't really an option either because his work place provides the only insurance we have. If it wasn't for this, there's no way I would be able to afford my rx's. Without my rx's I am positive I would not be able to work.
Changing work for myself, isn't much of an option either. My workplace knows I have limitations and are more than willing to work with me. A new employer, most likely not. Not to mention, I can't sit for long without pain. Lately, I can't sit at all without pain. Pretty sure it's either bone spurs in my joints or my siatic nerve. Neither good.
I apologize for the long post and thank those who have read this far. I'm seeking alternatives for helping with my fibro and more information overall.