Fibromyalgia

I finally got to the point when I decided the pain I was experiencing was more than just getting old. Everything seemed to hurt. My joints, my muscles from sitting to standing to walking, everything seemed to be hurting. I went to my primary care physician and he sent me to a specialist - rheumatologist. she in turn after asking me lots of questions, watching my range of movement, studying my medical chart and doing some blood draws diagnosed fibromyalgia!

Yay! I had a name for it, now how do I get rid of it? Oh, it’s an autoimmune diagnoses and the most we can provide for you at present is pain management and some physical therapy. So here I am, on time release morphine tablets three times a day with percocet as a back up for break over pain. I’ve actually had to use the percocet on a number of occassions, espically after shopping. I could list the spoons I have to use but won’t go into that here.

Autoimmune I thought, hmmm Who do you go to when you have a number of autoimmune issues but each is diagnosed by a specialist within their field??

I’m trying to find others who have this type or same kind of symptomatic issues to talk to about. I know there’s nothing they can really do medically at this point but, like Meneiere’s, it’s about autoimmunity and being sick of feeling sick.

Hi Holly –

Have a look at this post:

http://mvertigo.cloudapp.net/t/expert-opinion-migraine-and-fibromyalgia/2595

Scott

Hello,

I went through the same issues as you did and finally said enough and went 2 the doctor. My family doctor ran alot of different blood tests and then decided to send me to a speacialist. She then decided after more blood test that I had RA at only 24 years of age (which is very rare) so i did alot of different treatment from pills to injections and only to find they were making me feel much worst so she decided she didn’t want to handle my case and sent me to another auto immune specialist which then said it was Fibrmyalgia and kept giving me pain meds like it was candy. Well I couldn’t and choose not to take them unles I had to just to move because I had a 1 year old at home to take care of. After about a year of this I decided to go back to my main doctor and desuss things further and told he just gives me pain meds and sends me on my way. She didn’t like that at all like most don’t anymore. She then decided to take the matters into her own hand, she ran more test one that mattered the most which was a Western Blot Test. Now I have had this one ran three times one names lymes test and at one time my levels were elivated but they tols me that everyone has a form of lymes in there system, but the Western Blot test is one that is divided up even more and lets them grow things to find out. Low and behold I found out that I had Lymes disease at the age of 26 and that all my Fibromyalgia symtoms were in fact a symtom of this disease. I asked why is took so long and conclusions of so many things before they could finally diagnose it, a simple answer came out and its because it flows through your blood stream and an time we take blood it might not be flowing through that spot. After figuring it all out after 3+ years of this and all the research that pulled up while searching an auto immune disease and totally ignoring this one because I thought i would have remembered a tick that caused the bulls eye but most patients can’t even recall this bite. I know I can’t but remember a good handful of tick bites growing up with a camping all the time family.

Sorry so long I just understand how fusterating it can be plus all the meds they have to put you on just to find your right combo, I had to give myself injections and that was the hardest thing ever knowing it would make me so much worse for 2-3 days after.

Check with your doctors and do some more research on Lymes disease it could be a great possiblity and make them run test on it 2 or 3 times just to verify. You never know but just don’t let them throw Fibromyalgia at you until they rule out very other auto immune diseases. If you would like to know the more just let me know.

Thanks Cari

Hi Holly,
It is my understanding that Fibromyalgia has no known cause and I was not aware that it was an autoimmune disorder. Usually it is given to a patient when they meet certain criteria and more importantly do not meet criteria for other illnesses we can measure. It is real but unfortunately it really is a diagnosis of exclusion.

Many patients with fibromyalgia have found good relief from the tricyclics, SSRI’s, and SNRI’s believe it or not so it might be worth pursuing one of these meds. And you might get the dual relief of treatment of MAV!

Lisa

Holly, I have been diagnosed with CFS but I also have written on my notes autoimmune. If you have one autoimmune disease the chance of you getting another one is higher. A good book to read is "Living well with Autoimmune Disease by Mary J. Shomon. There are lots of good tips in there.

Christine

I continue to see a CFS/Fibro specialist who says that Fibro is neuro-immune condition not an auto-immune condition. Auto immune was a 1990’s diagnostic speculation that attempted to lump the illness in with conditions such as RA, MS, lupus, etc. Recent research and speculation is that CFS and Fibro may be related or two sides of the same condition or variations of other conditions that may include viral causality. But, let’s face it: no one REALLY knows for sure.
Gail

The medical profession is unclear of the cause of fibromyalgia, but certainly recognizes it as a very real problem that greatly detracts from quality of life. From my understanding, it is generally accepted that the way the body responds to and processes pain plays a major role.

Hey - is anyone here on Lyrica for Fibromyalgia? I’m on it for MAV, but I know it’s licensed in the US for Fibro as it’s apparently had great results. Here in Europe it’s licensed for Anxiety but not Fibro/CFS as yet.

Dizzy Izzy

Holly, I believe the latest thinking on fibro is that it’s NOT an auto-immune disease, and I’m really surprised if a rheumatologist told you it is.

It is thought to be a disorder of central (brain) processing of pain signals. I did see a rheumatologist once about the daily flu-like aching in my arms and legs, and he never said the word “fibro” (I don’t have tender points) but did mention “central sensitization to pain,” and I knew he was referring to fibro. But he did not want me as a patient, just said it was fine to continue taking my Advil and Tylenol.

My mother has severe, classic fibro and has to take oxycodone but I would avoid the opioids if you can. Supposedly exercise is helpful (but personally, I feel WAAAY better when I rest for several days in a row–rest keeps the achiness away!).

If your rheumatologist is calling this an “auto-immune” condition and just throwing opioids at you, I would look for a new rheumatologist! Some people have to use opioids but I would think that would be a last resort.

My mother has tried gabapentin (which is like Lyrica); I’m not sure how much it helped her, but recently her doc has had her on Effexor, and it seems to be making a big difference–her oxycodone usage has gone down noticeably and she seems to feel better. She has also been (in the past) on amitriptyline and Celexa and probably one more antidepressant, but the Effexor seems to be having the first real and tangible effect. She still has bad days but some amazingly good ones, too!

Best of luck,
Nancy

Hi,

Just over eight years ago I came down with what they thought was a bad Sinus Infection, due to the bad vertigo, migraine, intermittant hearing loss… After tons of testing all over the State of FL they said after 3 years that it was not an ENT issue but Neuro. So I went from one to the next because they would either reject me right off or try me on one drug after another until they gave up. Every migraine med made me so sick that phenergan was my best friend. So I have had just about every test that can be performed in the county, I can not get outside due to insurance restrictions…

What I have had has been one long migraine that gives me good days & bad, vertigo, nausea, occasional hearing loss. The migraine & vertigo have been constant with the only time I have had major relief was with heavy narcotics. After bouncing around through a half a dozen Neuro offices I found one who actually listened and researched and treated me, he looked over all of the other drugs I had been given and their families and started to think outside of the box. At this point I was spending 3-4 days a week in a dark room unable to do anything except keep try to do the things that I "had "to do. After exhausting all of the tests (MRI, MRA, CAT, PET,LP, Pints of Blood work and on and on) this Dr. tried me on Lyrica which lowered my symptoms from a good day of a 5-6 to a 2-3 and I was only out of commision 1-3 days a week. I metabolize drugs quickly and what this Dr. after several years of adjusting this & that got me on 800mg of Lyrica, 20-30mg of Valium (vertigo), 800mg 3xday of Ibuprofin. I also have as needed a store of phenergan, Scopace (motion sickness) and a script for Demerol as he said it was a waste of money and time to go to the ER and spend hours for little relief. The shot that they would give me they said would put me out for 4-6 hours and I would be up talking to them and back in pain 90-120 minutes again.

I was sent to a rheumatoloigist who said that since I did not have the typical pain points that it was not Fibro. and sent me off. I have learnt since from a Great Psych. that Fibro is being take out of Rheumatology and into Neurology. This makes sense, they put it where they did because of the symptoms and not the underlying causes.

My Great Neuro has shut his practice down and now I am with an inept Neuro and am looking for another. The problem is that there is not much else here in SW FL and my Insurance is almost imposible to deal with. There is no one in the Hospital system to help you find a new Dr. or help you get out of network (they had this dept. but closed it), so it is asking Dr’s to see if they know anyone and keep trying and trying until you find a good Dr.

My Great Neuroligist said that the defination of Fibro. has been changing as they keep finding new variations and the fact that I do not have the pain points is not unhead of. He is not the only Dr. that has put me into this, but now they do not know what to do with me from there. I have had constant pain for 8 years, it is on all sides of my head, top, sides, back, forehead behind the eyes. The vertigo goes from a slight wobble to crawling out of the bed as I have sprained my wrists from catching myself from falling and slammed my shoulders into so many walls (good thing that I do not bruise easy at all). I also lose hearing on occasion in one ear or the other, have issues with bright lights (flourecent) and loud noise.

I have gone through all of the common food triggers and given them up for months and then rotating around to another, no joy there.

I did the Balance expert who teaches people how to work with this and still be able to walk and get around. She said that she could see exactly what I had already heard is that it is of inner origin and is not vestibular. Both her and the Neuro. have seen Nystagmus when they did the Hall-pike manuver on me.

I also have a sister who has full blown Fibro. so there may be a family issue here.

I am looking to see if anyone else here has this or has heard of it.