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Avatar universal

How much pain?

Hi. I'm new here, but this site was suggested by a friend who has fibromyalgia. My neuro thinks this is my problem after ruling out things like MS, lupus, ALS, etc. I have pain in my neck, back, shoulders, arms and feet, but I also have twitching is all parts of my body, and muscle "fatigue". I guess it isn't weakness because I can still do the things I could do, but my muscles get shaky and tired. I also have difficulty sleeping and wake up many times, usually twitching. My question is, how much pain are most people in? It seems like so many people are in agonizing pain, while I just feel miserable, but taking 800 mg of advil every 4 hours, supplemented by 1000mg of tylenol every 2 hours seems to help a lot. I also have feelings of clumsiness and weird sensations, especially in my hands. Just curious if others experience this, or if my doctor is tired of seeing me and wants to give my problems a name so I'll go away. Thanks!
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Avatar universal
Thanks, I'll try that. I have celebrex now, but doesn't seem to do too much. I too have days where there is only some pain, and it is sad how you wish for those days to come back. I like the days my hands don't feel real clumsy either, but the colder it gets here in Colorado, the worse I feel. I'm sorry about your hip pain, I don't have that one. Just back, knee, shoulder and arm, so I'm grateful to be missing at least part of it.
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Avatar universal
I remembered something. Because my twitches were so bad my NP prescribed me Cogentin for my tremors (as they call it). It has helped so much. You may want to ask your doc about it.
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Avatar universal
I know exactly how you feel with twinges and 'asleep' like tingles in my hands and feet. Does anyone know if this is a side affect of FM? Sometimes I have great days where all that hurts will be on knuckle on my hand. I would like those days to come back. I wake up in the middle of the night in extreme pain because of my hip and the pain goes from my hip all the way down to my feet. I am worried about the amount of meds you are taking. You could give your liver problems. I have switched to Tylenol Arthritis (it is new here is AZ) and that has made a huge difference. Please let know how you are. Thanks.
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Avatar universal
Thank you for all the info. I'm taking celebrex now, which not sure that helps. You described by arm problems perfectly. It just feels like there are things I can't do, but I can. The weird feelings and twitching are bothersome, along with the pain. I do have the dizzy thing sometimes, but not fatigue, although maybe that's something I have to look forward to :) The pain seems to be everywhere, but concentrated in my shoulders, back, wrists and lower legs. My hips seem Ok. Anyway, thanks for all your help. It's nice to know there are others who feel like I do.
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1075109 tn?1281835691
Hi there,

Interesting name you've chosen - it makes me smile which is unusual these days. I understand your frustration. Ask yourself if the pain is just in your muscles or does it include your joints like elbows and knees.

As far as the weakness goes in your muscles it kind of feels like you have already been walking for 10kms, fatigued and your arms can do what you ask but they feel weaker. You find yourself almost dropping cups and knocking things over. The weird sensations you feel in your hands range from a sort of numbness to a sort of tingling.

You may find yourself feeling sort of dizzy or lightheaded at weird times and at others you just don't feel like your here. You can't seem to think clearly. I know I had my first bumper bashing in 23 years because of it.

Pain is relative. Some as you said are totally incapacitated but then they have severe joint pain and they have been suffering for quite a while. Headaches also tend to be part of it too. Sometimes IBS, Irritable Bowel Syndrome, but not everyone.

Doctors tend to diagnose it if it includes the whole body. Neck shoulders chest Hips buttocks knees. There are 18 sore spots that they should check. Note not trigger points because these denote transferred pain. If you have at least 11 of these then you are pretty much there.

However, by the grammage of what you are taking already I wouldn't say that you are not suffering from pain. Those are pretty high doses already so I would say that you have pain.

Well, that's my bedside diagnosis. I do know that exercise like walking and swimming help. Taking sugar, caffeine and carbonated drinks out of your diet are a very good idea and of course no smoking. I seem to remember reading somewhere that protein is very good but of course you would need to speak to the doc first considering diet. No preservatives would also help I think. I think it helps everyone now adays. Half of the problems everyone has today is because of that stupid stuff and now they're sneaking it in with colourants so be careful of that.

As I said, that's what I know. Pain levels are relevant to the person. Everyone is different but you will definately know. I think you do already but you're just afraid to push it with the doc. Well, I say don't suffer. Push it. And if he doesn't respond go and find someone who does know about the syndrome.

All my love
Sue in SA.
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