Fibromyalgia sufferers -

[transparant]

How were you diagnosed? I've been told that many Doctors don't take this seriously.

I have not been diagnosed - but I literally exhibit almost every symptom of it.

Tell me your symptoms and how you manage.

THANKS

 

[LBAK]

I was diagnosed by a wonderful rheumatologist but I had already been diagnosed with rheumatoid arthritis and sjogrens syndrome. Fibro usually goes along with most autoimmune diseases. I tested positive on a lot of the pressure areas common to fibro.

I'm on a lot of RA meds. already that might help the fibro. I make sure to get plenty of rest. I do the dishes and sit down, vaccuum and sit down, dust and sit down. Heating pads help me. Slowing down was the best thing I could do for myself. That and having my DH help more.

 

[TheOtherVillainess]

I'm not entirely sure how my mother (who suffers from this) was diagnosed. I think she ended up going to a rheumatologist, who now has her on pain meds and anti-depression meds.

I hope this isn't heridetary..I already have arthritis in my ankle, knee and hip. I don't need this too.

TOV

 

[phorsenuf]

A lot of Drs. do poo-poo fibro but I think it's finally starting to get a little more recognized. Find a good Rhuemy as they are the best to treat you.
There really isn't much they can do for you. Sleep and exercise (mild exercise) is good. My dr. recommends swimming and walking.
Rest and a good night sleep works wonders too.
I'm very sensitive too to cold and damp weather.

Good luck. I will tell you though it's a stinky thing to have. They say it doesn't progress but I do not agree with that at all!

 

[luvwinnie]

Do you live in the NJ/NY area by any chance?

 

[Tauwillow]

The converse is often true as well. Once you gain a diagnosis, any future problems you may have will be attributed to the fibro, making treatment for other illnesses difficult.

I think I might have fibro as well, but friends have told me to avoid getting a diagnosis since my insurance won't cover anything anyway.

(I also have Hashimotos disease and PCOS)

 

[phorsenuf]

The converse is often true as well. Once you gain a diagnosis, any future problems you may have will be attributed to the fibro, making treatment for other illnesses difficult.

I think I might have fibro as well, but friends have told me to avoid getting a diagnosis since my insurance won't cover anything anyway.

(I also have Hashimotos disease and PCOS)

Isn't that the truth! So often than not if you mention fibro (or thyroid) its chalked up to that. Drives me nuts! I had found a great Dr. who actually took my symptoms seriously and looked at my medical history instead of blaming fibro.
Unfortunately he left the practice so now I need to start over. Its so very frustrating.

 

[MushyMushy]

A lot of Drs. do poo-poo fibro but I think it's finally starting to get a little more recognized. Find a good Rhuemy as they are the best to treat you.
There really isn't much they can do for you. Sleep and exercise (mild exercise) is good. My dr. recommends swimming and walking.
Rest and a good night sleep works wonders too.
I'm very sensitive too to cold and damp weather.

Good luck. I will tell you though it's a stinky thing to have. They say it doesn't progress but I do not agree with that at all!

My doctor recommends all that, plus sex. he says anything that boosts the seratonin is good.

 

[luvwinnie]

The converse is often true as well. Once you gain a diagnosis, any future problems you may have will be attributed to the fibro, making treatment for other illnesses difficult.

I think I might have fibro as well, but friends have told me to avoid getting a diagnosis since my insurance won't cover anything anyway.

(I also have Hashimotos disease and PCOS)

It won't cover anything related to FIBRO?

 

[transparant]

Do you live in the NJ/NY area by any chance?

I'm from PA.

Thanks everyone!

I'm just glad that I think I know whats wrong now.

 

[Judy from Boise]

I have been diagnosed for 10 years. I was so lucky, my Family practice Dr. just sat and listened to me, did a trigger point test, and gave me the diagnosis. I didn't even know what it was prior to my appointment. I thought I was depressed.
I have tried everything. I now have a great plan that works for me
1. Deep tissue massage and myofascial release every 4-6 weeks
2. Chiropractic adjustment every 8-13 weeks
3. Nightly Ambien 10 mg
4. Daily Wellbutrin
5. ATP supplementation daily for muscle pain
6. Barely life daily for energy

I get the last two products at http://www.ATPconnection.com

and of course pacing is just a way of life!

 

[puggymom]

I was diagnosed over 20 years ago and through trial and error this is what works for me:

Going to sleep and waking up the same time each day
Regular exercise, I use a treadmill
CHerry supplements http://www.brownwoodacres.com/cflex.htm, I found about a month after starting these I noticed a difference
NO caffiene
No alcohol
Quit smoking
Fight the temptation to stay in bed when you feel bad, you need to keep moving

Things to avoid
Damp weather ( or even very strong a.c.) bother me and definately cause me to flair
Stress, after my father passed away I landed on disability for 2 months.

Good Luck

 

[binny]

Judy how did I not know you had Fibro?

I have been diagnosed for 5 years.

My triggers are stress and believe it or not High Pressure weather.

My insurance covers everything related to Fibro, I was diagnosed by a GP who did a trigger point test and listened to how tired I was and now have an even better GP who will book me for a half an hour just to listen and check my progress.

I take a nightly Lamictal for sleep, have a massage chair that really helps my back and take the occassional Ultram for pain.

mild exercise is a must for me but if I overdo it I feel it. If I get sick, which thankfully is very rare, I REALLY feel it.

alcohol in moderation doesnt bother me.
Caffeine doesnt either

I have to get a good nights sleep or Im useless.



The thing that really bothers me the most though is the "fibro fog" not being able to remember the simplest of things sometimes makes me feel pretty stupid.

 

[Judy from Boise]

Binny, talking about my chronic disease is boring!
I had a horrible whiplash when another car drove into the back of my car (it actually totaled the two cars in front of me!) and I developed Fibro afterwards.
I forgot to add to my list a few things
1. Nightly a very hot bath
2. I wear Birkenstocks or Danskos or Clarks only. I have to keep good posture, and these shoes are a must (32 pairs of Birks, 8 Danskos)
3. A temperpedic bed ( for years I just used a topper, but we upgraded last year)
4. I avoid drafts at all costs, I have moved 3 times in a restaurant to get out from under vents.Cannot tolerate air blowing on me.

 

[binny]

car accident for me too.

rolled a little Honda on the freeway when I was 20.


I also think it has something to do having Mono or another Eppstein Barr range sickness. Ive read a lot about that lately.

 

[Judy from Boise]

If you have a lot of muscle pain, you have to try the ATP! It has been a miracle for me!

 

[phorsenuf]

car accident for me too.

rolled a little Honda on the freeway when I was 20.


I also think it has something to do having Mono or another Eppstein Barr range sickness. Ive read a lot about that lately.

I've seen that alot about mono and Epstein Barr. I have also seen that alot of people that have some form of automimmune disease seem to have a higher incident of fibro.

 

[binny]

another board that I frequent was just talking about rice bags for muscle stiffness this is something I do as well.

I have a couple one of them is heart shaped that I put on my chest (oddly enough LOL) that is where 2 of my worst trigger points are, just under the collar bone. I also have a horseshoe shaped one for my neck. They have lavender in them which helps me relax when Im hurting.

I keep them in baggies in the freezer the scent lasts longer that way and they are also great if you have a headache a cold one on the back of my neck does wonders for a headache!



Judy, ATP?

 

[Chris2597]

Does anyone have any experience with Fibro sufferers receiving disability SS for their illness? One of my friends has been diagnosed with this and is having a heck of a time getting a dr to take it seriously. Her situation is really stressful and sad. Her dh died at a fairly young age 4 yrs ago, they had very little life insurance and she has been living on savings and her and her sons SS check. Her son turned 16 and her SS check went away, her sons check will stop when he turns 18 or out of HS. She can barely get out of bed some days the pain is so bad. She also developed high blood pressure that is not being well controlled with diet and meds and has bouts of depression. She talked to her dr about filling out paperwork so she could apply for disability and he said he doesnt believe in fibro disability . She has prior employment experience in the banking industry and is employable but she spends so much of her time in pain working would be impossible right now. She doesnt know what to do. Any suggestions?

 

[luvwinnie]

I'm from PA.

Thanks everyone!

I'm just glad that I think I know whats wrong now.

I have a great rheumatologist in NYC if you are willing to travel.