[CedarS]

I was first diagnosed with Chronic Fatigue Syndrome in the late 80s, several years later Fibromyalgia was added as diagnosis.

Let's see, what works? I take lots of hot baths, heat helps. I use menthol rub stuff on my shoulders and neck. I've tried various meds and treatments over the years, currently just taking Flexeril in evening to help with sleep.

A great self help manual is Bruce F. Campbell's "The CFIDS/Fibromyalgia Toolkit, A Practical Self-Help Guide".

Folks can feel free to ask questions and share what works for them, there is a lot of info out there but unfortunately no cure. And having both fibromyalgia (or any physical challenge) along with mental health challenges can definitely suck sometimes.

Sarah

[(JD)]

Sorry to hear about this, ya know. Chronic fatigue syndrome can go away. I wonder if you still have it, that the fatigue you suffer is directly from the fibromyalgia now?

[CedarS]

Some folks with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) do fully recover, some partially do, some improve, some stay the same, some get worse over time. And the course of CFIDS varies too, some stay stable, some go through lots of flares. Same with those diagnosed with Fibromyalgia.

CFIDS and Fibromyalgia have differing yet overlapping definitions and diagnosis. A lot of this has to do also with politics, research, who believes what theory, etc. I fit both definitions and am diagnosed with both, I follow the research on both as I am able. I could decide to drop the CFIDS label and only focus on Fibro, but there is value in paying attention to both. It's wild, these two illnesses may easily be different manifestations of the same thing, whatever that thing may be.

[(JD)]

yeah I was thinking that too... that perhaps many ppl originally dx'd with cfs might have had fibromyalgia then (instead?) can't help but think it has to do with the food they allow.. preservatives etc ya know? Need research on ppl who have healthy eating and fibromyalgia..if there aren't many then... there we go!

[complic8d]

I was officially diagnosed with fibromyalgia a couple years ago, but it was suspected for years before that (by myself and some other professionals). I never went it to check it out because I figured it doesn't matter because they don't know what to do about it anyway. Even after being diagnosed I was sort of sent on my way and wished good luck. I haven't had much luck managing the pain and my life with it. I never know what is too much until after I've done it. I have had worse pain after having physical therapy. I also haven't really found the right medicine to keep pain away. Of course, all of this just adds to the depression. So, I have been wanting to seek help in pain management but needed help with my "emotional stuff" first. In the mean time I have taken steroids twice and have had a great amount of relief with them. This caused me to wonder though, since fibromyalgia is not supposed to be inflammatory. I did some research to prove me right, but in the meantime I ended up in the psych hospital. There they ran the ANA (antinuclear antibody) test, which came back positive. This week I will be going to a different rheumatologist to follow up on that. The possibility is lupus, although I'm not sure I "fit" all the criteria. No matter what diagnosis I get, or don't get, I am going to try to get across the message that I need help in managing all of this. The fibro, pain, and mental issues have interfered in my work and home life and I can't continue like this. I just hope that I don't allow myself to feel belittled or "stupid" and not get what I need. I'll keep you posted on what happens and what other therapies they may come up with. Wish me luck!

[(JD)]

(((hugs))) yes, physical therapy can make you feel worse for a short time if done correctly (trigger point work for release) but worse for a long time if not done pertinently!!!

I hope it isn't lupus... but the ANA test and your symptoms... well I hope not.

It is a tough world out there getting the help with pain management you need. You need your own T to support you in continuing and remembering how to continue the fight! (Well, that's the only way I get through it.)

We are a connected being: mind/body. Any positive progress in one area will help your improve in others. It's not in your head... ok? Just thought I'd throw that in. ; )

[CedarS]

</font><blockquote><div id="quote"><font class="small">Quote:</font>
No matter what diagnosis I get, or don't get, I am going to try to get across the message that I need help in managing all of this.

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This is so important, vital, to keep telling the health care folks what is true for you. Might take awhile to get to someone who hears you, might not, but bottom line is that you deserve the right help and care.

[Eva1nder]

I have CFS and Fibro to. I'm not sure if you've come across any info on this, but I did sometime back.

The correlation b/t polio and cfs.

I went to a support meeting for cfs a few years back when i was really bad.

I met the author of The Polio Paradox Understanding and Treating "Post-Polio Syndrome" and Chronic Fatigue by Richard L. Bruno ( he happens to have polio and works out of columbia Presbyterian Medical Center)

It's extremely interesting b/c at the time of polio ppl were told to exercise and combat it and push themsleves, but in actually in doing so they were burning out what neurons were left. Causing what's now being diagnosed as Post-polio. It shows how you should protect yourself and preserve so you don't burn yourself out. It also goes on to show how when there was a vaccine developed for polio there was possibly maybe a mutation I believe I forget now in what country, but also in california where all the doctors and nurses who were treating polio patients ..began to all feel symptoms of cfs.

I read the entire book in one evening...it's extremely interesting.

Also, 2 other books that were extremely helpful difrectly towards CFS and Fibro were:

Chronic Fatigue Syndrome, Fibromyalgia and Other Illnesses The comprehensive Guide by Katrina Berne

Living Well with Chronic Fatigue Syndrome and Fibromyalgia (what your doctor doesn't tell you...what you need to know) by Mary j. Shomon

btw she has an excellent site

if you want it... you can pm me for it.. i don't think i can post it here

take care everyone
Eva

[complic8d]

Well, I had my appt with the rheumatologist. He confirmed the fibromyalgia diagnosis and doesn't think there is anything else at this time. The best part was that he was sooo validating. He guessed about a traumatic childhood and that I live on guilt. He could see that I was extremely overwhelmed by it all (especially after I started crying! ). He agreed with my t that I should probably stop working for a while, to give myself time to heal and find some ways to manage the pain. I'm still not sure about doing that though. (It just wouldn't be me to do something for myself now would it?!) I have had a roller coaster weekend and am trying to make some hard decisions.
This was the first medical doctor that actually looked at the emotional side of illness, and how the psychological and physical bodies interact with each other. He did not, however, make me feel that the fibro is "my fault" or that it is not a real disability! How refreshing! He also suggested a book, called "The Power of NOW", which I completed this weekend. It is about living in the present, not the past or future, which is something I need to learn how to do. It is a good book, although very deep. I will need to reread it several times. I highly recommend it.
Thanks for being here for me, you all have been so supportive and validating. HUGS!

[CedarS]

So good to hear that you have a decent health care person, and that you got the diagnosis confirmed, makes all the difference.

[jbug]

I have been recently told I have fibro. My mom has it too so it makes it a bit easier to have someone to talk to about it and she knows when I'm hurting because most of the time so is she. My doc won't give me any pain pills because of my history with ODing and so I have to plug on like a little soldier. I am hoping that I can prove to him that I can be trusted with pain pills so I can have some for when it gets really bad.

Janniebug

[CedarS]

You may already be using these ideas, but just in case, thought I'd list some things that help me, at least they sorta take the edge off.

Hot baths, I adore them, helps so much with stiff achy muscles. When I have the energy to actually stand through a shower, strong jets of hot water on my shoulders and body helps also.

I take flexeril at night, some doctors are much more at ease prescribing that as opposed to pain meds. The flexeril helps me sleep, loosens up tight muscles some.

Gentle massages are great, I haven't been able to get any for awhile, but they do temporarily give pain relief. Important that the masseuse not be all macho in trying to pound out the knots and all, that only makes it worse. Gentle, soothing, warming massage is best.

Low key rambling walks to stretch, loosen up shoulder muscles, get distracted from the pain.

Lots of good books out there, all to be taken with a grain of salt of course in terms of belief, follow your own instincts. Steer clear of anyone who tries somehow to blame or guilt trip you about your health.

Some folks have had success with capsules of turmeric, when they are not able to get regular pain meds.

I'm off for a much needed hot bath myself. Good luck with it all.

Cordially,
Sarah

[(JD)]

Most of this is good to hear, especially about the support.

With that said, how is it a rheumie "guesses" a link to a traumatic childhood and fibromyalgia??????

Anyway, did he prescribe any meds for you?