I get alot of nerve pain with my fibro and with most illness like MS etc there is evidence for this with lesion seen in brain and spine so what causes the fibro nerve pain i can be in agony for a day or mths and then suddenly it goes and they can never find anything on the mri, do you think in time they will find a mri stronger enough to pick up these differences?
is the hyper sensitivity where i cant bare to be touched a type of nerve pain too?
I think from what I know about fibro, it the diagnoise when nothing els can be found to be causing the pain. in other words thay have no idea why is cause yet as far as I know. Its a very unknown disorder and some dr and many people think it in people heads but as I suffer from pain that no one can tell is caused by anything I know its posiable for there pain with out a known reason yet we dont know everything about everything yet theres got to reason but scientist have not figured that out yet as far as I know. Thay may have theroys but nothing certain.
To me "nerve" pain and "fibro" pain are very different. If you've ever had a ruptured disc and the disc is pressing on the nerve and causing pain down your leg or down your arm that is nerve pain. Fibro pain is such an ache, an ache too the bone. Being touched even lighting when you have fibro pain is awful.
There are several studies and different docs who have theories on fibro pain. I have read it's has to do with dopamine, another study suggested is completely linked to the sympathetic nervous system in our bodies, others suggest a virus that has lied dormant in our bodies. And a doctor I went to years ago really believes everyone with fibromyalgia should be on a low dose thyroid medication. Of which I've been on for years, and when I am not my fibro pain is debilitating. I also have looked in to Candida, excessive yeast in our bodies. I get a lot of symptoms of it and when I do my fibro is at it's worst.
I believe tracking your symptoms, when you get them, what seems to bring them on is critical. I've done this over the years and it's allowed me to come up with some sort of formula that helps me manage my pain and prevent it. It does not always work. Stress can bring it on no matter what I do. If I stress my body with exercise or even walking I can get a complete flare up. But figuring out your triggers is key. I hope this helps.
i tired the dopamine drugs as my dr said that some people are lacking in dopamine in the brain but it sent me into a psycotic episode so came off it i am on muscle relaxants and fenntanal pain patch and antidepressant.
i have changed my diet learnt to pace and chose what i can and cant do, tired acupuncher,osteopath,chriopractor,pain clinic,all types of drugs, hydrothreapy and massage and the drugs i'm on now work best and my faith helps me keep going when my understanding fails!
i dont understand how there can be so much pain when nothing to see but then i think its there but they just cant find it or maybe all us fibro patients are the 5 % of people who dont show lesion in there mri on there spine or brain and we have MS as it does say that 5 % of the popolation do not show any lesion i do feel its a disorder of the cns like ms they are identiacal in a sense yet fibro seems more pain related there have been studies saying end stage cancer is as painful as fibro can get scary.
but i have learnt that it can be managed to a degree and although i am disabled by it i am no longer bed ridden by it so who knows where i'll be next year.
Which dopamine drugs did you try? They prescribed Mirapex for me, i remember taking it years ago and I remember a bad reaction so I don't think I will fill it. I have also changed my diet and do a lot of alternative therapies. It's helped me so much.
You are right about faith. Something struck me years ago. I'd be in so much pain and I'd forget to pray. Then I'd start saying my prayers and some how that helped so faith is so important.
Fibro is so confusing and I like hearing from someone who is as confused, I'm not happy your are confused by any means but I've been trying for 15 years to figure this out. I use to get a newletter from Fibromyalgia Network. I saved one newsletter, it was about the sympathetic nervous system. It just seem to make so much sense. It was tying FM to problems with the sympathetic nervous system. Do a search on that when you have time and see what you think. The fetanyl patch is often used for end stage cancer and is always used for us FM patients. that always struck me as well. I used the patch for a while too. I take Cymbalta, antidepressant that helps FM pain. I also take a low dose thyroid medication. I met a doctor who has retired, his theory was all FM patients needed to be on low dose thyroid medication. I know if I am off of it I can't move.
I also take Iodine supplements, Grapefruit Seed extract-immunity, and Astragalus-if I start to get sick, Enzymes for digestion, and Vit D2000. This cocktail of supplements has changed my energy and health. That and 3 days a week at the gym in the pool, walking only.
I'm glad you are not bed ridden. Things can't be good if we aren't up moving. So keep in touch!
Thats so true i am so glad not to be bedridden any more and as long as i never go back to that point again i can just about cope, its important to get a good support system behind you too i dont have any family mum and dad died back in 99 and an only child support for the children and me was hard my present husband left as the drugs effected me greatly and completely changed my personality so support was needed more, i had carers for a while as i could not even wash myself but since then i have a p.a paid by social to help with house work and cooking.
the combi of diet light exercise natraul remedies and medication and my faith helps manage my illness its daily thing an hourly thing on bad days just getting by hour by hour still trying to make good memories with my kids and friends when i can and relaying on god to carry me through the bad times. i will goolge some of those things you use i take vit d and calium but not heard of others.
My mum died in 2005, so awful not to have our Mothers. It caused a solid year of depression for me. I miss her so much. I do have my husband here with me but it's taken a toll on him, me being sick all these years. I know what it does to a marriage. I am sorry to hear your husband left. You sound like a great person just a person with pain.
Take care and always wonderful to hear from you. Do you live in England?
YES I LIVE IN ENGLAND. I MISS MY MUM AND DAD SO MUCH BEING AN ONLY CHILD WE WERE SO CLOSE, CHRISTMAS IS NOT THE SAME WITHOUT THEM THEY LOVED CHRISTMAS SPECIALLY DAD EVEN WHEN I WAS IN MY TWENTIES HE DID PLACE UP LIKE A CHRISTMAS GROTTO LOL. YES ITS TOUGH WITHOUT MY HUSBAND HE WILL BE HERE FOR CHRISTMAS DAY AND BOXING AS I ASKED HIM TOO AS I REALLY NOT STRONG ENOUGH TO COPE ON MY OWN THE WHOLE TIME AT THE MOMENT AND I AM BETWEEN HELPI USUALLY HAVE A P.A HELP ME AROUND THE HOUSE. KEEP IN TOUCH.BE NICE TO BE FRIENDS SAM
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