Help Please - New victim of Fibromyalgia - Fibromyalgia Acti...

Fibromyalgia Action UK
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Help Please - New victim of Fibromyalgia

Paininthebutt757
Paininthebutt757

I was diagnosed with Fibromyalgia 2 weeks ago. My symptoms are constant extreme pain in my upper and lower leg muscles. I have continual "Pins and Needles" in both feet and some times in my left thigh. The pain is extreme most of the time and is preventing me from carrying out any normal daily activity. I have very little pain when sitting or lying down, but as soon as I stand it kicks in and can often be excruciating to the point that I cannot walk. I am being treated with Pregabalin for the pain and high dose Vitamin B12. It had been suggested to me that "Steroids" might help eliminate the pain. Does anyone have any suggestions or advice, either medical or dietary that might help me with this condition.

11 Replies
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MichelleButterfly
MichelleButterflyFMA UK Volunteer

Hello Paininthebutt75 and welcome to the forum.

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How long have you been taking Pregablin for? It can take up to 6 weeks before you may notice any difference. Can you see your doctor and ask for any advice on taking something that may help in the meantime like paracetamol, Co codamol etc.

I am sorry I can not advise on the steroids I've never been given the option.

I have been taking Pregabalin for 2 weeks, so far there has been no reduction in the pain level, when I am standing or trying to walk it comes over in waves, sometimes quite mild and other times excruciating pain that stops me dead in my tracks. I cannot walk more than 10 paces before the pain forces me to find some place to rest, either to sit down or at the least lean against something until the pain passes or reduces.

Hi and welcome to the club nobody wants to be in. Early days for you and because fibro is different for all of us it is difficult to advise on what will or won't work. It's a case of trial and error. I, and several others on here can't tolerate prescription meds so we have to make do with supplements, heatpads, tens machines, biofreeze gel, gentle exercise etc. I also use my chiropractor and hypnotherapist. Diet plays a big part in my fibro and if I stray from the processed food free, refined sugar free diet I am in trouble. Learning the art of pacing yourself is also very important. We are only human and on better days we tend to try and get everything done - big mistake as the fibro sprite will want payback as soon as you do. That's not to say that occasionally the payback is worth it particularly if there is something you are desperate to do.

As for steroids - although I am not a medic and so may be wrong - I thought they were for inflammation and as my other half is on them for severe inflammation (GCA/PMR) not sure how they would help fibro. Not something I have ever been offered or has been discussed with me.

You may find a referral to the pain clinic helpful or if you are local to London or can get there a referral to Guys and St Thomas's fibro clinic. They operate a one off appointment where you would see several specialists who then write to your GP with their recommendations for management/treatment/onward referrals.

Good luck and I hope you find out what works for you.

Dinks.

Thanks for the advice. I live here in Spain so things are a bit different, my doctor is trying a "Trial and Error" approach. The trouble is, that does NOT address the extreme pain problem quickly enough. CBD Oil helps, but only by allowing me to sleep, it doesn't seem to have any effect on the pain.

You might find steroid doesn’t help it didn’t fir me it made it far worse. Diet is huge I know you hear about gluten & dairy ... you have to eat low FODMAP and give up coffee for awhile. If you have a juicer use it celery juice and steam your veggies really good. I have to take expensive pro biotics twice a day. And rest when I have too. Getting rid of sugar & gluten & acidic foods will help with lots of water. If you’re stressed it gets worse. Rest but also move your body. Breathing exercises and if you can’t move much breathe stretch and do relaxation vit d3. Though it’s hard try to walk as soon as you can it hurts but helps. Go to the pool walk in there if painful. Eat very clean and avoid the above and move avoid stress. You’re body & mind is taxed you have to clean it up.

I would also buy l-glutamine take a scoop twice a day and collagen once a day. Buy at health food shops it helps repair your gut. There’s a product called GI revive its $75 though it has lots in it to help. You need to try to get as anti inflammatory as possible and don’t let the doctors pump you full of meds it makes it much worse. Give up booze totally until you’re back to yourself.

I will try, giving up the booze will not be too easy but needs must!!

I’m the same. Severe stress & meds. It started after constant pain I needed surgery constant drugs I tried it all. Get your stomach in order & stress do breathing moving get rid of the booze go clean & move your body. It goes all over your body. I got better before I was younger & went through stuff bank to back health & life. This time hardest. So is the stress and anxiety from stuff then this hit me like you no end @ people don’t get it you can’t move. I’m so inflamed it makes you dizzy. Try saying vroooom several times it helps nervous system. I smoke I need to quit but I slowed down on it trying to get there. So if you must drink now & then drink vodka Soda with mint in it it’s the cleanest alcohol just saw that on tv.

I gave up all grains,,not just wheat,,, all dairy including eggs,, all meat including fish and alcohol is a NO NO. I basicaly live on fruit and some raw veg now and I couldn't go back!

See a chiropractor. Some symptoms have similarities with pressure on nerve roots. Doctors have very little understanding of this issue.

I am willing to try anything to stop the pain. I have the details of a good local Chiropractor.

I think it serves well to remember the old adage: that to the man with only a hammer every problem is a nail.

The danger is one can end up runnig round like a headless chicken.

To be honest my gut feeling is you likely have a problem with tirggerpoints. My reasoning is:

The fact that your problem is worse when you stand suggests the problem is beyond the root nerve (lower) . If the problem were pressure on a root nerve theoretcaly it should be worse when your sitting and even worse when lying down as there is more pressure on the root nerves in those positions strange as it may seem! With you it is quite the opposite you are worse when in a upright position, which is why I think TPs are a likely cause of the symptoms your experiancing at present. Finding someone good with triggerpoints may be the difficult part,, the treatment they do seem to respond to best with over all is dry needling.

Some of the nerves in the legs could be very irritated,, and a bit of steroid could go a long way to calm that,, however it is not a wise treatment for longer term use but a quick on and off should be grand. It would not however do much for triggerpoints in the muscles,, that would be a seperate issue and indeed a reason that the nerve could become so irritated in the first place.

I do think it is perhaps worthwhile doing a search for a local phisio who treats triggerpoints with dry needles,,, it takes carefull palpation, and it should feel different very quickly if that is the problem,, they are common in people with fibro but much egnored as no one wants to spend the time and energy searching and treating them. In fact once they are found and your directed to where they lie you should be able to feel them yourself.

Have you tried just having a massage,, with some people they respond very well to massage and it dosen't even have to be deep soft tissue work,, just having the parasympathetic nervous system stimulated can work wonders at times.

Best Wishes, Ray

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