Fibroymalgia Is So Sore I Feel Like It's Going To Kill Me

[persephone]

Do many of you POTs folks also have fibromyalgia? I am in agony with it- can barely type or stand.Definitely feel like the tin man from the wizard of oz

I don't know what I can do to help myself- am off all forms of codeine just now, and the cymbalta has suddenly just STOPPED taking the pain away- it worked flawlessly for 2 months and now has just lost all efficacy.

I think the cold and damp weather has a lot to do with it.

Do others have any tips?

I'm meant to be going back to Oxford on Saturday but the truth is, I can't walk 100 yards right now, I'm so sore. Even lying curled up in a ball in bed is hurting me

HELP!

[deucykub]

Hi, Persephone:

I am so sorry! I have fibromyalgia as well, and there is nothing that can compare to that kind of pain. What dosage of Cymbalta are you taking? You mentioned you are off of all Codeine; do you have any left from before? When I have that kind of breakthrough pain, the only thing that knocks it out is a pain killer and sleep. I would call your doctor ASAP so he/she can get your meds adjusted and get you back to class!

I really hope you feel better soon. Hang in there and get lots of rest, particularly restorative sleep.

You're in my thoughts!

Deucykub

[lthomas521]

Have you tried B12 shots and carbon dioxide rebreathing?

[mkoven]

I don't formally have a fibro diagnosis, but have a lot of muscle and joint pain from eds that i've been told are essentially secondary fibro-- muscle pain from trying to stabilize sloppy joints.

When I'm having a bad flare, I have to first of all look at any triggers. Have I been on the computer more? Walking more? When I'm on the computer too long, I'm guaranteed hip, back, neck, shoulder, arm, and hand pain. I have to then take regular breaks, make sure everything is as ergonomic as can be, and see if there are several ways of completing the same tasks and alternating among them-- I alternate bw a sitting and standing position for computer work, for example. I've had great occupational therapy to help with that.

I then need to find out which areas need massage-- either on my own with trigger point work, or with a massage person.

Sometimes my period causes a huge pain flare.

and when nothing calms stuff down, having rescue pain meds. Until I became allergic, vicodin was a godsend. I'd only need it once or twice a month, so I could fall asleep, but when I need it, I need it.

Hope you feel better soon!

Michele

[persephone]

Thanks Michele! I think I'm having a bad flare because of my new year trip to scotland- I could feel it coming on then- it was so cold and my joints just haven't recovered since. I was also doing loads more walking than I really felt I could manage- but had little choice, so I guess I'm feeling the payback from that

It is so weird though- it's like the cymbalta has literally stopped working over night, after 2 months of absoultely brilliant pain relief. I don't think I have ever been so foggy headed as I am now.

And of course, my anxiety is making it worse- "why have I flared? what have I done wrong? what if I'm STUCK LIKE THIS?!"

etc etc

But I am going back to Oxford- I'm biting the bullet. There's nothing else for it...

Thanks for your replies though...

[mom4cem]

Sorry you are feeling so badly. I have fibro also, comes in flares but definately gets more intense with the cold weather and with stress. I don't take any meds for it though outside of tylenol or advil, I can't tolerate the harder meds.

Try some warm baths with epsom salts? Hope you find some relief soon.

[mkoven]

Hopefully this will settle down once you are back to your routine. I often have to remind myself that I don't have to be heroic-- that there's no medal for pushing myself until I'm just about to break. My new year's resolution is to balance my activities better so that I can better maintain this cranky body.

My current source of misery is back and hips. I'm going to try to do more computer work in a recl;iner to give them a break. I've already had one spinal surgery and know that I absolutely don;t want to repeat that!

My hips keep subluxating and it freaks me out. And most "normals" have no idea what I mean when I say I've popped a joint. Not some little click, but like a train coming off the track. Arrgh. And of course they do it at night too when I'm in bed. I'm then awakened with my hip bones stabbing me in the rear and groin. I wish I could staple or super glue everything into place!

[dizzygirl]

hey persephone hope that you feel better soon and are rid of the pain before you treck back to oxford..

take care dear

love and hugs

dizz

[Guest tearose]

Hope you did okay Persephone! Did you find a way to ease the pain?

be well, tearose

[persephone]

Hi Tea (and everyone),

It's strange but since I got back to Oxford, my joints are heaps better. My wrists are mainly where it's at- they hurt the most, but this is great compared to not being able to get out of bed for most days in the past week. I went on a two hour walk this afternoon and I'm going to try the gym tomorrow. We shall see!

Hope you are all well

[HEIDYLYNN]

I was wondering who do you go to about Fibroymalgia? Your GP? I don't have an appointment until June with Dr. Grubb. This sounds like how I have been feeling over the last few months. What test do they run to find out if you have this? I am going to try the bath to see if it helps. Is there anything else you can do for the pain?

Thanks

[persephone]

Hello TYKA! They can test you for fibrmyalgia by touching parts of the body which are identified as 'trigger points'- they hurt more in people with FMs than normal people.

The person you would do best to see is a rheumatologist- that's who diagnosed me anyway.

[pat57]

persephone, I found relief from muscle pain through acupuncture, and great relief. My pain was from car accident tho.

good luck.

Your Icon makes me smile everytime I see it.

THANKS

[Lukkychrm42]

Hey Perse,

I've got fibro as well, and so do my sister, mom, and grandmother. I actually didn't know that cymbalta would help with the pain from it, but I'm glad to hear that you're doing a bit better. Have you ever looked into biofeedback? I haven't done it myself, but I've heard good things from other people. My sister used to get prescription massages for hers, but for her, the main symptom these days is fatigue. I also believe that mild exercise can help with the pain, and so can physical therapy.

The only painkiller I've ever been on for a significant amount of time is ibuprofen. Frankly, I've tried going without it only to collapse to the floor in pain. Bring on the nurofen!!

At any rate, I hope you find some combination of things that helps. Take care of yourself, and have a great term!!!

[Donna F]

Hello all,

I was recently told that i have fibr,along with all the other ailments, however, my neurologist didnt even explain to me, i hurt all the time, not sure exactly what it is but for the past few wks i have been on pain meds, the ibu and other over the counter meds dont touch it, i do not like takin pain killers never have, but if our pain is so bad that nothin else works does anyone else find that they need stronger pain killers?

donna