Do I have Fibromyalgia? Post your stories...symptoms...how you cope..

[Western Chick]

Let me start by saying...I know I need to ask a Doctor, I plan to. But I understand that Fibromyalgia is one of those conditions that is not well-undersood by general practitioners so I want to have some background. I've searched some health websites for symptoms of FM but all the info seems to be quite vague so I want to hear some experiences from those of you who have been diagnosed with FM and how you're treating the symptoms.

First a little background on me- throughout high school and college I was very athletic- an all-american on my college swim team, I trained year-around both in and out of the pool. I'm now 30-ish and married, had 2 kids and consider myself to live a fairly active life. I no longer swim due to time constraints and pool availability and I don't excercise for the sake of exercising. I do, however do at least an hour of chores daily which involves walking, pulling, lifting, climbing, bending...etc.

My first experience with chronic pain (not associated with swimming) was about 4 years ago I started seeing a chiropractor for headaches. I had tension in my neck and shoulders and the adjustments helped relieve the pain. More recently I've had more muscle pain in my back, neck, hips, arms and knees. I've been seeing a different chiropractor for almost a year, this has the headaches under control but my other aches and pains seem to be getting worse.

As far as sleeping, I have no problems falling asleep, I can fall asleep at the drop of a hat at any given time of day or night. I generally get 7-8 hours of sleep at night but I wake up feeling very tired and unrested. Last weekend I slept ten hours at night and then took naps for 2 hours on Saturday and Sunday! (For once we didn't have much going on.)

So I've read about these trigger points used to diagnose FM and I'm assuming this is something the Dr. needs to check out, I can't do them on myself, right? What kind of pain is associated with them? Is it an unbearable pain or just tenderness when pressure is put on a particular point? Is it one of those "oh you'll know" type of deals or is it something I might not notice if I've been dealing with that type of pain for some time now?

I have also been diagnosed with depression and I'm on meds for that as well as hypothyroid- controlled with synthroid...(makes me sound like a messed-up hypochondriac, at least that's what my DH thinks). I've read that these things sometimes go hand-in-hand though.

So, any thoughts? I'm afraid if I mention FM to my Dr. she'll just pass it off as another crazy lady fishing for a diagnosis. I would really like to know what is causing all this pain even if there isn't much I can do about it.

 

[Buck Creek Chickens]

I know what you mean them thinking your crazy, or they just give you pills and tell you to go home. I don't know anything about FM but I hope you can figure it out. could your thyroid meds be off, that will make you tired. I bounce up and down with thyroid.

 

[kitkatbahr]

You need to be diagnosed by a rheumatologist to find out if you have fibromyalgia. I do have it. I was lucky in that my general practitioner knew about it and suspected that I had it, when I asked if it was a possibility. She immediately referred me to a rheumatologist. He is the one who does the pressure points diagnosis, among other things and is the one who officially says if you have it or not.

I was diagnosed about 4 years ago, but I believe I have had it for many, many years. It was only when the pain was intolerable and for no "apparent" reason that I finally went to the doctor to find out why I hurt ALL the time. Even my darn skin hurts sometimes. Weird, I know. Anyway, I am glad I finally went. I am now (after trial and error) on a medication that does help some. The pain never really goes away, but the Tramadol (Ultram) that I am on does help sometimes. There are days though, where nothing helps and I just hurt and ache from head to toe. The best way I can describe it is like a really, really severe tooth ache, but in my entire body! All of my muscles hurt and ache at the same time, but especially, for me, my hips, back and legs.

Anyway, it sounds like some of the symptoms may match fibromyalgia, but the only way to get a real diagnosis and get help for it is to see a rheumatolgist (one that believes in the disease). Yes, there are still many doctors who think that fibro is "all in your head". Believe me, though, if they had to live even one day with it, they would change their tune in a hurry!!

Good luck. I hope you get some help.

Kathy

 

[crtrlovr]

Sounds all too familiar....

You can test the trigger points yourself; I believe if you have sensitivity in at least 11 of the 22 (?) points you're considered to have FM. I know what you mean about the "all over" sensitivity; sometimes my husband's breath on my skin feels like fire washing over it. There is a chart or diagram somewhere (do a search for FM trigger points) that shows where they are, but some are: outside upper area of hips (a ligament runs there), inside of knees, tops of shoulders, mid back just above the waist, along the collarbone, low back about halfway between spine & outer hip, and there are others that aren't shown on the chart. My personal "favorite" is right in the middle of each upper arm (like where you'd get a vaccination). owwwww...... The sleep issue is different with each person. I vary from not being able to go to sleep to dropping into bed and going to sleep immediately, then waking up a dozen times a night. It's not about how long you sleep; it's about the quality of your sleep. I finally got a sleep number bed and for the first time in several years I had some measure of relief. I went to a physiatrist (not psychiatrist, a physiatrist is a dr. who works with body mechanics and medications together) who put me on a regimen of Ambien to help me sleep and STAY asleep and Zanaflex for muscle cramps & spasms. They have made a world of difference for me. I still have some days where I'm barely moving, but better than before. Use good body mechanics: don't overstretch, keep your elbows in close to your body, use a stepstool instead of overreaching, and LISTEN to your body. My biggest obstacle is when I finally DO have a good day, I try to cram too much into it, and then I pay for it for the next few days (or weeks...) Drink plenty of water; that helps, too. When I was first diagnosed I cried -- for the frustration of it, but also in relief that I wasn't crazy or a hypochondriac. PM me if you want to talk sometime

 

[Rolsjo]

I have fibromyalgia and was diagnosed 5 years ago. I was very fortunate to get an appointment with a fantastic rheumatologist who has treated many fibro patients. We spent about an hour and a half just talking about my daily life, what kind of pain I have, where it is, how long it lasts, what, if anything relieves it, etc. Then he checked me for pressure points. Ouch! When one of my points is pressed on it is a very painful tenderness that lasts 1-2 minutes after the pressure is released.

I know, from many women I have talked to, that fibro usually has an onset after some type of physical or emotional trauma. An accident, a loss, major stress in your life can all trigger the symptoms to begin. Mine manifested after a family tragedy. So that is something to think about as well.

Pain: It typically affects my neck and shoulders the worst, but I have arm and leg pain sometimes. Although one of the tricky things about fibro is that the pain will show up in different parts of my body at different times. I have had a really sore toe for a day! I have to be extremely careful about any repetitive actions, like knitting, and limit how much time I spend on those things or my arms and hands will cramp up. My pain level is related directly to the weather. The colder it gets the worse pain I am in. I also have flare ups that I have finally identified as nerve pain, as opposed to muscle. It is almost as if, there is a dimmer switch attached to my nerve endings and over the course of a day or two they become hypersensitive. Lights are brighter, sounds are louder, smells are more intense. On those days, I only wear very soft clothes because the feel of the fabric on my skin is so uncomfortable. Eventually this fades away over another day or two. Oddly enough, this happens once a month at a *ahem* specific time of the month.

Fatigue: I also sleep well, but wake up feeling tired. Some days are better than others. I have also experienced periods of not being able to fall asleep at all, thankfully that is not too often.

Mental issues: I have had periods of mild depression, but mostly just brain fog. Which if you've read about fibro, means lack of focus and lack of concentration.

Treatment: So I started dealing the pain and fatigue by taking Flexeril, prescribed by my rheumatologist. It did relax my muscles and helped me sleep, but it also made me so groggy I could barely function the next day. I have tried to avoid lots of meds because I am only 40 and don't like the idea of being on prescription drugs long-term. I don't take pain killers because only narcotics can touch my pain, nothing OTC works at all. Last year I stopped taking the Flexeril altogether and started seeing a chiropractor. He does Contact Reflex Analysis and has been a huge help in getting my energy level back up. I also have a history of thyroid issues and he has helped get that under control. The other thing that has helped greatly reduce my pain is The Miracle Ball Method by Elaine Petrone. I am still amazed at how well these little balls work. You can order them through Amazon or buy them at Sam's Club, Costco, Border's Books, and others. I can not recommend these enough. About the only thing I haven't found any help for is the nerve pain when I have a flare up. I assume it is somewhat hormone related, but need to find someone to test that for me.

I would recommend you ask your doctor about the Fibro and if she is resistant ask for a referral to a rheumatologist, this is what they do.

kitkatbahr and crtrlover: Wow! You guys are the first ones that also have the skin sensitivity that I do. My mom, sister, MIL and aunt all have fibro, but I am the only one with crazy skin. I am so relieved I'm not hte only one!

 

[Hillbilly Hen]

I have it also. The best way I can describe my pain is it feels like you have the flu without the fever. You just ache so bad. I also have osteo arthritis and nerve damage from back surgery. However I am very sensitive to medications so I cannot take most medicines for pain and such. I also try to do as much as possible when I have a good day. Different things will trigger a flare up for different people. With me it is lack of good sleep or the damp weather. Living here, spring is the worst time of year for me.
Go see a rhumatologist soon as you can and good luck!

 

[Turtle]

I have the same issues as you do. I had thyroid cancer about three years ago and they took half of it out. I am Bipolar and have dealt with depression since I was 13 yrs old. I am going on 44 this year. I take Cymbalta and it has helped but I am still tired all the time and can sleep 7-10 hours and still be tired all day. I was taking Synthyroid and I was worse now I take Levothroxin and its a little better but I still have pain everywhere and most Dr's seem to ignore it and say its due to my depression. I am still always tired even when I dont do anything and I have a hard time getting to sleep because of the pain. I have my Thyroid checked often and it comes back normal but I have read you can get a normal and still not have enough hormone to have your body work like it should. The worst part is I dont have insurance and dont have a lot of $ to go through all the test they always need to find out what is wrong. I just keep plugging along hoping one day to get it all dealt with.

to you

 

[PineBurrowPeeps]

They believe I have it too... But I just wanted to say off the top of my head:

Get tested for Lyme Disease please. And a URINE LD test, NOT a blood test. They are radically different!
The blood test only shows if you currently have a LD infection. The urine test shows if you have EVER had LD.
Even if you don't currently test + for it in blood, you can still have it in your system making symptoms.
I have Chronic LD and I only test positive in blood now and then. Thankfully my blood has been testing - for over a year now and I have no had a flair up.
My very first symptom of LD was horrible migraine headaches and by that point they estimate by MRI of the brain that I had already had it for over 10 years and never knew it.

The symtoms of Lyme, Fibro, and MS are VERY close.
Something like 30% of people diagnosed with MS actually have Lyme Disease.

 

[Rolsjo]

Quote:
That is what was happening to me. I had thyroid cysts in my early 20's and had them taken care of. I have had my thyroid tested yearly since then and they always come back normal, but I still felt lousy. It was my chiropractor who put me on some natural supplements (massive Iodine doses, for one) and it has helped tremendously with my energy level.

 

[PineBurrowPeeps]

My Thyroid has always tested normal but I have tons of symptoms of thyroid issues