Anybody out there with fibromyalgia? (Full Version)

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cherish405 -> Anybody out there with fibromyalgia? (5/13/2008 1:42:27 PM)

Asked a rehabilitation physiologist if they could help with the bursitis I have in my shoulders. When told about some other of my medical problems, she suggested that I have fibromyalgia. I've talked to my doctor about this, and he thinks it's a definite possibility, but won't diagnose it as it's tricky to diagnose.

I've started doing some exercises with the rehabilitation physiologist, and she doesn't say that it's possible that I have fibromyalgia, she tells students and me that I have fibromyalgia. I see a specialist about something else next week, but I'm going to ask him about fibromyalgia. See whether he will diagnose it, or send me to somebody who will.

Just wondered if I'm alone in this catagory or if there are other sufferers out there who have it too.



etnlyHis -> RE: Anybody out there with fibromyalgia? (5/13/2008 2:00:32 PM)

cherish

I have syringomyelia... its a 'cousin' to fibromyalgia. have you had MRIs to check and be sure that there is not something else going on? fibromyalgia is a diagnosis often used when all other tests show that there is not somethig else wrong. you may want to look it up online. there is loads of information available. you are definitely not alone.

some doctors don't have much experience with it though, so the way it is treated varies from one place to another.



cherish405 -> RE: Anybody out there with fibromyalgia? (5/14/2008 10:57:56 AM)

I haven't had an MRI done. I'd never heard of syringomyelia before. Both the rehabilitation physiologist and my doctor think I have fibromyalgia. I will be talking to another doctor about it on Monday and he specialises in everything. Hopefully I'll know one way or another just what exactly is going on.



peculiar_lady2 -> RE: Anybody out there with fibromyalgia? (5/16/2008 7:03:43 AM)

I do not have it, but one of my best friends does. It can be pretty hard to get a dr that does a proper diagnosis of it though (from what she has told me). Hers went undiagnosed for something like ten years or so...and she has had to really push to get the kind of specialty care and dr's she really needed to get the official diagnosis.



cherish405 -> RE: Anybody out there with fibromyalgia? (5/16/2008 12:30:59 PM)

I go and see a doctor who specialises in everything on Monday. Hopefully he can give me more help than my usual doctor has.



drnick -> RE: Anybody out there with fibromyalgia? (5/19/2008 11:40:04 AM)

Be very careful not to get labelled with a diagnosis like Fibromyalgia without being checked out properly.

It's a diagnosis of exclusion (you rule everything else out), and so some extent it's a "no hope" diagnosis, inasmuchas there is no test for it, no known cause, no proper treatment, but it gives some people a "label", and that's what they want.

Also, one drug (Pregabalin - developed for epilepsy) has somehow got a licence to treat Fibro in the US (but not worldwide, interestingly), so suddenly more people are getting diagnosed, put on this stuff, and getting side-effects.

I'm not saying you don't have Fibro, but what you relate isn't nearly enough to come to such a conclusion.

My mother was diagnosed with Fibro a few months ago, given tablets which made her ill, and turned to have simple osteoarthritis - ie wear & tear to joints, plus muscle strain around those joints. Not a great deal you can do about it, but certainly not Fibro.



cherish405 -> RE: Anybody out there with fibromyalgia? (5/21/2008 12:20:45 PM)

Doctor is checking me out with all sorts of tests to rule out other possible causes.



staychill -> RE: Anybody out there with fibromyalgia? (5/29/2008 1:38:39 PM)

i think i have it, it hurts in the back of my shoulder blade and at times it feels like its killing me, i just want to cry, i know i should see a doctor, but i am so afraid of them. and i dont want pain pills, i want it fixed. i did find out that if i try to move the whole bedroom then the next day my back really thanks me for it. im only 23 and this should not be so much pain, i have felt this since high school . it goes and comes back. i tried to take alieve , but it dont work, and i dont know what does. and people dont believe me all the time when i say it hurts because im young and i push myself and they just dont know.
as treatment,,,, once i had my husband walk on my back, it hurt so bad i could not stop laughing. and then as his foot reached my neck the laughs truned to squeeks. lol but it did help.
one thing that helps a lot is when someone just rubs my shoulders downward, i know it sounds wierd but it feels so good.



teachered -> RE: Anybody out there with fibromyalgia? (5/29/2008 10:45:38 PM)

After going to several doctors over a 3 year period I was diagnosed with fibromyalgia in 2003. I was hurting all of the time all my entire body would ache. Before I was diagnosed with fibro my doctor did thorough test to make sure it wasn't an auto-immune diesase, such as lupos or anything else.

A year after being diagnosed with fibromyalgia my husband came across a book and in it he read that some people that have been diagnosed with fibromyalgia also have food allergies. I asked my doctor to refer me to an allergist and she did. I found out that I tested allergic to so many foods. I just posted a thread called "food intolereances/allergies", you can read more about that on the post.

I would recommend you keep a food diary and take note as to how you feel after you eat. If you notice that you are hurting more after you eat try to narrow it down to that particular food, I would ask you doctor to do a RASP (I think thats what it's called) it's allergy testing where they test your blood. I would also ask he/she to do the skin testing as well. Most of my allergies are internal, they affect my cells & after eating certain foods I feel like some one is sticking an iv needle in my body & digging around trying to find my vein.

It is very frustrating and there is not a "magical pill" that you can take for fibromyalgia. You have to be really careful not to let the disease/disorder take over your life. There are times that I become very depressed, but I cry out to God in desparation & he gives me the strength to go on.

Blessings



cherish405 -> RE: Anybody out there with fibromyalgia? (5/30/2008 2:18:13 PM)

Thanks for the insights, teachered. Much appreciated. I'm getting tested for autoimmune diseases too to rule them out.

Staychill, I know you don't like doctors. I'm not real keen on them myself, but it sounds as though you need some help. I know the pain that I feel, and I'd hate to think that somebody else is going through it, especially somebody your age.



Liveloved -> RE: Anybody out there with fibromyalgia? (5/30/2008 11:59:24 PM)

Cherish,
After being in constant pain for years, I was diagnosed with fibromyalgia. The drug, amitriptylene, worked miracles for me. I went from constant pain (feeling like I'd been hit by a truck) every day and not sleeping at night, to being relatively pain free and sleeping! I know that this drug does not work for everyone with fibro but for me it has been a God send. Bless you as you continue to learn about what's going with your body.[:)] If you have any questions, I'll check back later, LL



cherish405 -> RE: Anybody out there with fibromyalgia? (6/2/2008 12:15:47 AM)

Thanks LL. At this stage, I'd just like for a doctor to tell me a definite diagnosis. I mean, I do have those in the medical profession who do believe that I have fibromyalgia, but nobody is willing to diagnose it.



daughter_of_faith -> RE: Anybody out there with fibromyalgia? (6/4/2008 10:18:19 AM)

My S.I.L. has fibromyalgia. I'm not sure how it was diagnosed as I'm "new" to the family & she's had it for awhile. In fact, I hadn't met her until Grandpa's memorial service last month.



March7 -> RE: Anybody out there with fibromyalgia? (6/7/2008 3:48:41 PM)

Hi! I've had fibromyalgia for 25 years, but it wasn't diagnosed until about 8 years ago. Like some of the rest of your respondents here, I just felt achy and crummy (like the respiratory flu without the fever and respiratory part) most of the time for no good reason. My skin hurt, my muscles hurt, my joints hurt, my head ached, my eyes hurt, and my mind was foggy...to mention just some of the symptoms. Getting into a swimming pool felt like walking into shards of ice. Bit by bit over the years God has shown me piece by piece how to improve my health through diet and exercise and this-n-that. A year and a half ago, after much prayer on my part, God led me to a medically trained and state-licensed Doctor of Naturopathic Medicine. He's done many labs and such, and, after a year of his treating me with homeopathic and other safe herbal remedies (plus more dietary changes), I can say my fibromyalgia has been reduced so significantly that I barely notice it any more. My body responded slowly to the help, because it'd been "under fire" for more than half my life (I'm 44), but it responded and still continues to do so. In the meantime, this doctor (through labs and such) uncovered some of the medical conditions it turns out I have that contributed to the symptoms of fibromyalgia. Treating and resolving those has been a part of improving my fibro symptoms. In the meantime all these years, God has allowed me to learn so much about trusting Him in the midst of hardship, has taught me that suffering is a part of growing in Christ, and has enabled me to be even that little bit more sensitive to others who are hurting in some way. Also, not having the stamina to be a go-get-'em kind of wife, mom, and homemaker forced me to learn to sit still with God and sit still long enough to really be there for my family members. I'm not boasting in myself but in God who knew what kind of training I needed as a part of the lifelong process of becoming more like Christ. This is the training I myself needed over many years (as I would have been one of those very administrative-no-time-for-others do-ers rather than a listener). I'm not saying this is what everyone must endure to learn to follow God. What I do want to say, though, is even if the process is slow God is always faithful. So, God bless you, Cherish. Amen.

So, how are you, and what have your doctors discovered so far?



cherish405 -> RE: Anybody out there with fibromyalgia? (6/8/2008 12:13:14 PM)

I didn't get to go to church this morning as I'd had very little sleep. Even with pain meds, I was in too much pain to sleep properly.

I'm going to have some tests done this week, (blood, urine and xrays), but I don't see the doctor again for a couple of weeks.

I haven't been to the rehabilitation gym for a couple of weeks due to having overseas visitors here, being sick, and being too sore. I think I'm just going to have to force myself to start going again this week so that my body just doesn't start getting sore due to inactivity.

Thanks for sharing, joninon.



March7 -> RE: Anybody out there with fibromyalgia? (6/8/2008 5:09:06 PM)

quote:

ORIGINAL: cherish405

I didn't get to go to church this morning as I'd had very little sleep. Even with pain meds, I was in too much pain to sleep properly.

I'm going to have some tests done this week, (blood, urine and xrays), but I don't see the doctor again for a couple of weeks.

I haven't been to the rehabilitation gym for a couple of weeks due to having overseas visitors here, being sick, and being too sore. I think I'm just going to have to force myself to start going again this week so that my body just doesn't start getting sore due to inactivity.

Thanks for sharing, joninon.



Bless you...



peculiar_lady2 -> RE: Anybody out there with fibromyalgia? (6/8/2008 6:15:31 PM)

ugh Trish....praying that your dr's can figure this whole thing out for you....I know you have been through a lot of pain lately.
Have you tried any elimination diets to see if some of it is food related sensitivities?



cherish405 -> RE: Anybody out there with fibromyalgia? (6/9/2008 12:27:05 PM)

The doctor has had me eliminating all sorts of foods over the years. Lactose, wheat etc, but still nothing. Just need to get a doctor who will properly diagnose my problem.



teachered -> RE: Anybody out there with fibromyalgia? (6/9/2008 1:48:00 PM)

cherish,

I know that I had mentioned this before, but I would really try to get allergy tested (through blood, not the skin test). I was very surprised that I was allergic to such common foods as potatoes, rice, and corn (to name a few).

I pray that God will lead you to the right doctor. I know how frustrating it is when you are in constant pain & the doc's don't seem to care.

Blessings,
Damita



Row1 -> RE: Anybody out there with fibromyalgia? (6/9/2008 5:24:33 PM)

fibromyalgia is controversial.
many people believe that it does not exist, as a medical condition, like we understand other medical conditions.

there are many theories and ideas.

but there is really no clincal indicator / lab test / physiological indicator that says, hey you have fibromyalgia.

there is only a set of symptoms.

at the pain spots, there really is not anything there to image by xray or mri or any other way (although this is controversial).

so, with some sureness, generally all that 'medical knowlege' can say is:
1. there is a group of people out there with this set of symptoms
2. there seems to be response to a couple different medication strategies, so that is worth a try.

this is one of those more 'vague' illnesses, since there is no test or imaging, so a lot of the treatment is done by alternative practitioners. those interventions could be helping out by some truly corrective, healing factors, or could be working by a placebo effect, or by the waxing and waning of symptoms in coincidence with the trial of various treatments.

stronger evidence, such as one intervention working in patients in gernal, versus hit-or-miss, has not really yet been pinned down.

just be careful of what interventions you try. use the internet to research safety.



cherish405 -> RE: Anybody out there with fibromyalgia? (6/11/2008 12:30:54 PM)

Damita, thanks. I'm going to be getting several blood tests done.

Row, I'm aware that not everybody believes that conditions such as fibromyalgia exists. Only some medical people are willing to diagnose it.



March7 -> RE: Anybody out there with fibromyalgia? (6/11/2008 9:58:46 PM)

There's a new fibromyalgia website I noticed in, like, Good Housekeeping Magazine, called www.fibrocenter.com. It's so new that, while it's all developed, not much has happened at it yet. It might be a helpful place, however (though I think it's sponsored by one of the drug companies so beware of the pharmacueutical bent, I guess).

A book that was very helpful to me, because it was well-rounded and not bent toward one drug or one doctor's theory, is Living Well with Chronic Fatigue Syndrome and Fibromyalgia: What Your Doctor Doesn't Tell You...that You Need to Know by Mary J. Shomon. Another book I liked, simply because it made me feel like someone understood, is Parting the Fog by Sue Jones. It's in no way medical but just personal anecdotes and poems.

Other websites I've found along the way are www.fmaware.org (National Fibromyalgia Association); www.fibrohugs.org (a patient website); and www.restministries.org (not just fibromyalgia but a Christian website for patients with chronic pain and other disorders). There used to be a couple of really neat websites by a couple of very godly women with fibromyalgia, but I can't find them anymore.

[sm=icon_smile_fish.gif]



cherish405 -> RE: Anybody out there with fibromyalgia? (6/12/2008 3:00:35 AM)

Thankyou so much for those links!

I was just wondering how people with fibromyalgia manage to live with it. The balance between activities, (working/family/recreation) and down time, (rest).



March7 -> RE: Anybody out there with fibromyalgia? (6/13/2008 10:13:42 AM)

quote:

ORIGINAL: cherish405
I was just wondering how people with fibromyalgia manage to live with it. The balance between activities, (working/family/recreation) and down time, (rest).


It definitely can be quite the adventure of following after the Lord, being patient with family, and trusting God to help others be patient with you. And, boy, it can be the adventure of seeing the (especially spiritual and relational) sights God wants you to see, of learning, and of growing. [:D]

Here's a poem by a woman from another era who lived with chronic pain and illness most of her life as well. It's one of the many little things God's used to encourage me. Maybe you'll like it, too.

The Thorn
by Martha Snell Nicholson

I stood a mendicant of God before His royal throne
And begged Him for one priceless gift, which I could call my own.
I took the gift from out His hand, but as I would depart,
I cried, "But, Lord, this is a thorn, and it has pierced my heart.
This is a strange, a hurtful gift, which Thou hast given me."
He said, "My child, I give good gifts and gave My best to thee."
I took it home and, though at first the cruel thorn hurt sore,
As long years passed I learned at last to love it more and more.
I learned He never gives a thorn without this added grace:
He takes the thorn to pin aside the veil which hides His face.



cherish405 -> RE: Anybody out there with fibromyalgia? (6/13/2008 11:49:20 AM)

I don't have a husband or kids, so from that point of view, it's easier on me. I'm also not working, so that also makes life easier for me. I just feel as though I'm doing nothing, unlike those who manage to continue to work/study/have families etc.



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