Fibromyalgia Community
Fibro help
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Fibro help

Hi, I am new so hope this works. As the US has known more about Fibro longer than the UK,can anyone give me advice on what helps them.I get severe head,neck and back pain..plus many other areas of the body.Any meds from doc do not work and i just get sent to pain clinic and specialist etc etc over the years..but my pain is getting worse!I am reasonably active but I do not work as i could'nt.My headaches are very severe,at present I get cranial osteopathy and try to stay healthy and sane. The staying sane is pretty hard! lol Antone have good suggestions on things i could try? Thanks
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Avatar_f_tn
There are alot of drugs to try from Lyrica, Neurontin, Cymbalta (Antidepressant for pain) other antidepressants for pain, accupuncture, massage, water therapy.  Quite a few different meds for migraines - there is a pharmaceutical part on this site you could try, reed further down think someone has listed it, new.  Everyone is different.  Keep reading down to older postings as quite a few people list the drugs they have tried.  No one thing works for everyone.
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Avatar_f_tn
I've had fibromyalgia since 1992. I remember when they said I had it. I said "ok what now." it's been a life long process of trial and error. And we are all very different.  
I am sitting here right now with my Tens unit on my neck. If you have not heard of those look that up on the internet. They use the commercial version in physical therapy. IT really helps. It's like electrical stimulation. It is small electrodes that are sticky that you place on the area of pain. So right now I have them on my neck. I've had horrible migraines the past few days.  It sends pulses, you can set it at different frequencies.  If you have health insurance ask your doctor if one can be prescribed. Mine was prescribed for me and after a certain amount of time paying on it I own it now.  

I also ice my neck when the headaches and neck pain get very bad.  I also take Topramax daily. It is suppose to keep migraines away.  In addition I take Epidrin at the onset of a headache. This all usually works great but I still can get 1-2 migraines a month.  
I have also had 7 surgeries on my spine so I am on oxycontin 40 mg per day and percocet for breakthrough pain.  They don't always prescribe that for fibromyalgia but if your FM is that bad some doctors will. I did try Lyrica, way too many side effects and I personally think it won't be used in the long run for FM.  Neurtontin is good when you have nerve pain, another one I personally would not take daily or long term due to side effects.  I do take Cybalta. It is supposed to be an anti-depressant but works for pain so they prescribe it for fibromyalgia.  There is a member on medhelp that had some bad experiences with it. I have had a lot of success with it but with any medication research it.  Mirapex is another one there have been studies to show it helps fm. Lots of people have had side effects and bad ones.  My doctor wants me to try it. I still have not filled it. And may not.
I also met with a doctor who specialized in fibromyalgia. He believed that even if your thyroid tests came back normal if you had the symptoms of under active thyroid a low does thyroid medication helped FM people.  So I've taken a low dose thyroid medication   for years.  
And most recently I've been taking Iodine supplements.  There is a lot of research on iodine.  Check it out.  It helps with weight loss, diabetes, heart, etc.  Again always look up any supplement or medication.  And Vitamin D 2000.  
I also take Grapefruit Seed Extract for my immune system. I have found over the years that I get run down and sick often with fibromyalgia. If I can keep my body strong in other ways I can fight off the pain flare ups.  I also get B12 shots monthly.  That really helps with fatigue and preventing me from feeling run down which leads to pain/flare ups.

Also foods.  White flour, white bread, white potatoes, white rice.  Simple sugars like cakes, cookies, soda all make pain worse.  

Take care and I hope this helps.
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Avatar_f_tn
Hi,thankyou both for your advice.
Trouble is living and getting treatment in UK is so much different thsn the US.You guys are far forward in meds and tratment! I have had electro-accupuncture, tried Gabapentin,Oxycontin (which Neurologist just said a big NO to!) Amitriptyline,Neurontin,various NSAID's and anti-d's.Nothing is helping me and i cannot get hydro therapy as i live in a county that does'nt provide it.
Oh boy its a hard one i know :-(
I tend to take Ibruprofen and Codeine as it helps reduce pain at time - 'Neurofen plus'. Lyrica had too many side effects so thats out so really i am stuck
I will ask my doc about the vit B12 injections and see if they can provide them.I don't have health ins, it works different over here and the PMT (our NHS in local areas) only offer physio and counselling..so any other advice out there would be appreciated
Many thanks from little me the UK x
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