I am just starting a link for anyone who wants to chat about their illness or contribute any new info they have!
Maybe we can help each other somehow!
Fibromyalgia Pain and Fog!
I am so glad to see someone has finally posted something about this horrible disease. I am only 44 years old and have had this all my life, but was finally diagnosed with it about 6 years ago...I would love to start a chat support group somewhere, if anyone would be interested, please write me. We use to have one on delphi forms, and it was so nice, cause everyone could come face to face and share their stories and medical advise.
I have found that several things go with this disease, I am going to list the ones that are common with fibro, but drs dont tell you:
Menstrual problems, dental problems, jaw pain, depression, not thinking straight, or remembering things. This is what I refer to as my fibro fog.
And alot of people with this disease has not got alot of support through their family or even spouse and children. If they dont have it, its hard to explain the pain you are in all the time, and how it effects your life. I am one of the lucky ones, with a loving spouse that helps me tremendously with everything.
Swimming and water excersise is probably my greatest help with fibro, but I still have my moments!
Well, I will hush for now..Im just so excited that someone has found this out, and is willing to start a group for it. Please write me, as we all need friends in this disease, and maybe we can meet in chat. Thats the great thing about the internet, you can make friends, and not have to clean up or go outside your home, and for some of us with fibro, that is a blessing!
I know exactly how you feel!!! No one seems to understand the feelings that go along with this. First, everyone makes you feel crazy because it is so hard to get diagnosed. Then it seems like they expect you to just get better because you know what it is. I guess people just assume there is some kind of quick-fix and don't realize that it is barely even treatable. My poor doctor ran so many tests on me without success before he finally sent me to a specialist. I don't think I could even count all of the tubes of blood and x-rays they took. I don't know how it started for other people but mine seemed to come on kind of sudden. I have had migraines since I was 10 but they started getting worse (even Tylenol 3 won't take them away now). Then my lymph nodes would swell up(had to go to a surgeon-they thought it was that Hodgkin's Disease, thank God it wasn't). Then I would get these aches in parts of my body that nothing would help take away. Every day I would wake up feeling like I had been beaten in my sleep. And the fatigue is just out of this world. Everyone kept telling me, "Well, you have 4 kids...that would make anyone tired". They just didn't understand the extreme fatigue-not just being tired. I am only 30 years old and feel like I am falling apart. My doctor wants me to do the water therapy but I don't have time to go without the kids. Plus, my insurance won't cover that...nor will they cover the massage therapy which my doctor says would help a lot! So, for now I try to rest when I can and take my meds...Tylenol 3, muscle relaxers, anti-inflammatories, Xanax for my nerves because stress is my worst trigger besides the weather. It's a wonder I can even function between the meds but I only take them as needed (not all the time). Boy, I went a little crazy going on here, I better quit now. I don't usually talk to people about this (except my sister) so I guess I just let it all out, LOL! Oh, the other thing I was going to say, gypsy, is tha it is funny you mention menstrual problems with it...I just found out Thursday that I have to go in for surgery because my "girl stuff" is messed up, too. I have always had funky cycles anyway but the last few years with this have gotten horrible!! At least this part is something they think they can fix, unlike the rest of it! OK, I'm really done venting now! Here's to good wishes for everyone who has to live with this disease everyday!!
I am glad to see I am not alone. Some days you are so tired and others do good.
Knock on wood but have been doing pretty good.
Will share with others and boy do I hate to say this but cut the coffee out. I have found if I hold mine down to no more that 4 cups a day I am all right. But the book I read say no coffee. If I have a cup of Pepsi that equals 2 cups of coffee for me. Fruit make sure you eat some every day.
When you feel tired (if you can rest) 15 to 30 minutes does wonders. Fish eat at least 3 times a week. Sleep try to get enough it helps.
I know this sounds silly but I was so bad that I was willing to try anything. I too was told too much stress, burnout, lazy you name it, nerves, its all in your head. I was so happy to finally find out what it was.
Hi everyone! I am so glad you started this thread, stacylyn347. I already feel like I know most everyone from YDF and I feel much more comfortable talking about fibro here.
I was diagnosed when I was about 27 and I'm 40, almost 41 now. Mine came on suddenly. One night I went to bed and my back was aching. Overnite it got much worse and I didn't sleep hardly at all. You guys know how it is when you don't take the antidepressants you don't get into that deep sleep and toss/turn all night? That's how mine started. The next morning I was a basket case.
Now I take Effexor and love it. I used to alternate between Elavil and Imipramine. I had a very hard time adjusting to those and slept so hard I wouldn't hear my kids at night. When I did wake up, I was drowsy all day. With Effexor I don't get drowsy and it helps the muscle pain more. Unfortunately I do not have insurance and the meds are not cheap. I can't take anti inflammatories as I am allergic to them. I have tried everything.
Unfortunately I also have a severe lower back problem along with Fibro (a result of my twin pregnancy). The pain there is very very severe and the fibro now seems to be worse because of it.
I am open to any suggestions at all that might help and would love to hear how others deal with their fribo!
I am so glad to 'meet' everyone in this forum!
I don't like the Elavil either (all I did was eat and sleep). The only anti-depressant that worked for me was Serzone and now there has been some kind of recall on that one. They tried me on nortriptylene (sp?) but wow...I took one of those and couldn't get out of bed for 2 days!! Can't do that with kids! It was supposed to block the pain center in my brain so my body would quit telling me I was hurting. Well, I guess that would work since you never wake up! Most days I just try to ignore the pain (yes, I know that's easier said than done ). I do rely on my meds but I have to drive my kids around a lot so I have to be careful when I take them. The anti-inflammatories don't do much for me...the rhuematologist said that is because your muscles aren't actually inflamed or swollen. The muscle ralaxers and narcotic pain meds do help but then of course you have the side effects of those.
I quit any kind of caffeine (except the occasional chocolate). I still smoke which I know does not help. Whe I say I have had this for a few years, I actually mean I have only been diagnosed a few years. Probably like most of you, it took a long time to add everything up to get your diagnosis. About 7 years ago, I started having panic attacks when I kept getting these pains (would think it was a stroke or heart attack or whatever was going through my brain that day). I didn't find out until much later that panic attacks are VERY common in people with Fibro.
Two things that have given me some extra info (in case you haven't found them yet):
1. http://www.efibro.com (I don't care for their message board too much but they do have some good info)
2. A book that my mom bought me is The Fibromyalgia Advocate
It has lots of stuff in there that just seemed to explain so much.
Has anyone else here had an MRI that showed spots on their brain? I saw on another message board that others besides me have had this and I am curious to know how common this is?
Thanks for responding everyone and try to stay positive!!
I have an immune disease that is similar to lupus (my ANA runs very high, but they don't think it is actually lupus). I contracted mono when I was 15 and it hit me hard. I had to go through rounds of steroid shots and tons of visits to the hospital. I was ok from age 16-19 and then wham, all my symptoms came back.
I am now on Social Security (and I am only 23 ) but I do manage to go to college. I have had several doctors tell me I have fibro and CFS. There are times when I have have tender spots that are so sensitive you can't touch them. And the fatigue and nausea are unbearable. The only thing is, I only have relapses in my condition maybe twice a year for a few weeks at a time...if that. It is not constant like the pain you guys are describing. I don't know if it is a misdiagnosis or what. I just assume it is part of my immune disease. I have also had migraines since I was 10, but thankfully I only get one or two a year now!!!
I have been on antidepressants for years. I can't even name them all! Up until recently I was on a combo of Luvox, Serzone, Topomax, Inderall, Imitrex, Ativan, and Restaril. I have terrible anxiety when I have a flare up because I honestly feel like my body is pooping out on me! I had to stop the meds because of recalls etc. as was mentioned above.
For the past several months I have been feeling good. I am eating better and exercising which helps (except on days where I have joint pain). I also get regular injections of B-12 because somewhere along the line I got pernicious anemia. They are miracle injections for me!
A lot of people think fibro is all in your head because there is not a clinical test for it. I guess people treat me different because my bloodwork always comes back very abnormal and they have some sort of proof I am sick
I am always hoping that one day there will be a cure for fibro. But even if they don't cure it, I would like to see some sort of clinical test that will prove to all doctors that this problem does exist and it is not just in the minds of the sufferers!
Amen to that, echo!! My specialist said the trigger point test is a joke because in people with Fibro (and similar diseases) there is almost nowhere on your body some days that isn't sensitive to touch! I know out here at University of Michigan they were doing some clinical reasearch studies that they wanted to get me in but I just don't have time for that. Hopefully they will find something, though!! My aunt has lupus and I know what a rough time she has living with that, too. Sorry to hear you are going through something similar (but it may not be a misdiagnosis with the Fibro). There are some people with it who can go for some periods of time without a flare-up. I personally think it just depends on what your triggers are. Mine personally seem to be stress and weather but I know there are a lot of others. Good luck in your treatment!
Tessa - I am going to a pain clinic, but it is more for the lower back (facet joints, etc.) than the fibro. With no insurance, there is not much they can do except prescribe meds. I am on a combo of Oxycontin, Percocet, Soma and Effexor. I do wish I could take anti-inflammatories. They don't always help the fibro, but even if they helped sometimes it would be a relief.
I'm going thru a stage where there just doesn't seem to be any relief for the fibro. I hurt all the time. My muscles feel like they are being pulled and twisted.
What does everyone else take that helps the muscles? Soma seems to be the only thing that helps me besides the Effexor and it makes me very sleepy, so I can't take it much during the day. The muscles burn and then hurt so much they actually itch on the inside.
What type of specialist do you guys go to? Rheumatologist? Does anyone live in the Atlanta area? I definitely need a good specialist.
For my "official" diagnosis I went to a rheumatologist and a neurologist (also ruling out stuff). But now I just deal with my regular doctor. Basically he justs makes sure I have my meds and offers me anything new he hears about in the way of treatment. There isn't a whole lot of other stuff that helps me. I know what you mean about the Soma...they really are the best muscle relaxer but they make me drowsy, too. Actually the first time I took one I couldn't even hold my head up. The only thing that really helps me during a bad flare-up is heat on the bad area but that is really hard to do when you are on the go. I wish I could be more help I would call some rheumatologists in your area and ask if they deal with Fibromyalgia. Some neurologists are starting to deal with it, too (because studies are showing it has a lot to do with the nervous system, too) but some doctors don't want to deal with it.