Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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Rainbowsearching 01/04/2015

Things were going great........medication was finally giving me some relief, I then changed jobs, doing something less physical and pain almost disappeared completely. For 2 months I've been feeling great. Stupidly I started forgetting my tablets as the pain wasn't there to remind me to take them. Then just before Christmas I came down with a cold (still not quite recovered) Christmas was busy visiting family etc and work has been more strenuous in the past week. I have now crashed! All my symptoms have hit at once, I'm getting electric shocks randomly in my muscles, intense pins and needles between my shoulder blades, muscle twitches, fibro fog and muscle weakness to the point that today I could hardly walk as my right leg wouldn't support me. 2 days ago I noticed it coming on again so I made a concerted effort to take my meds. Stupidly I tried to go back on the gabapentin at the dose I was on before, straight off without increasing gradually, this gave me awfull headaches and I've still not adjusted so feeling quite dizzy and out of it to add to my problems.

I'm now feeling quite depressed because I hadn't realised and appreciated how good I was feeling until now and I'm frustrated that it's hit me this hard this quickly. I'm in a senior position at work and I can't afford for this to get in the way. Just when I thought that I was back in control of my life I'm suddenly feeling powerless again. I'm in so much pain I just want to cry constantly. Will I ever get a grip on this or is it always going to control my life? :(

simone71 01/04/2015

i have days like this too :( you will pull yourself back up itll be ok again :)

dadsgirl1 01/04/2015

Hi Rainbow... I don't often respond on this website, but I have been a member for quite sometime now. Your entry really got to me because it made me think about how no one but someone like you and myself, and others at this website, can understand what you are just describing. I so want to say to my family just what you are feeling and saying, but I don't. It sounds like we are crazy right? -- I know you are not, and neither am I, but that's what I think I will sound like if I tell my family all that is happening to my body like you described.

It's tough to have this illness that no one can say, how we got it for sure, and no one can tell us about a cure, or the way to get rid of it.

Be thankful for those good days when they come, because unfortunately, this can flare up at anytime and may take quite awhile for the "flare" to calm back down. I have tried going off of my meds, including some for other problems than fibro, thinking that I can maintain on my own. So far it hasn't worked and I walk the thin line of the right amount of meds and my own tolerance level. Unfortunately, this took quite a bit of time and bad flare ups to achieve.

Feel better soon, and know that you are definetly not alone.

Rainbowsearching 01/05/2015

Thanks dadsgirl, you're right it is the most frustrating illness as it is so vague and unexplainable. I know that the pain I feel is very very real but I feel like others doubt me. I lead a fairly normal life, not letting it hinder me in daily activities but doing the simplest of tasks takes more effort than for most people and it hurts when it shouldn't and this is so draining. Yesterday when my leg was giving out in me I was walking like an idiot, I felt so self conscious and I was at work!! I had to tell my colleague what was wrong as she was looking at me funny. I was sooo embarrassed. As a manager I have tried not to let my staff know I have this syndrome as I don't want them to see the illness and not the person. When I told my colleague I had FMS she just looked at me confused and said 'oh' but I kinda wanted more than that - a bit more sympathy as it is such a horrible thing to be dealing with, but of course she had never even heard of it and even if she had without living with it you can never understand just how hard it is. It sucks!

LeoX3 01/05/2015

Oh yeah, that's a familiar story. I was in med-free remission for years on my FM, but the first time I forgot that the FM needed careful handling? It handed me my butt on a plate.

Think of it like any other chronic illness---my epilepsy, in my case---or maybe diabetes. Careful management means you feel fine---but you need to keep it part of the daily routine no matter *what*. (I was kinda "lucky" in that my epilepsy hit at 19, so I was experienced in that sorta stuff before my FM dx at 25.)

You can and will regain. It'll be okay. It really will. And please, never ever go off or on meds without doctor's supervision. My sister did that and died, so I'm a bit sensitive on the topic.

Gentle vibes of support.

Rainbowsearching 01/05/2015

Thanks Leo that's really good to hear, I will try to be more mindful of my limitations in future. Warning headed re meds and sorry to hear your experience, I will be making a concerted effort to keep taking them even when the pain is at a minimum. Good news is today I am feeling less of an effect from them so think I am adjusting.

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