Fighting Fibro

Aloneoncloud9

Aloneoncloud9

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Sep 18, 2015
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Since I didn't see a topic about fibromyalgia I thought I would start one. I hope that's ok. If I missed it feel free to direct me. Anyway just wondering if anyone with fibromyalgia has had any success with relief? What works and what doesn't? I've tried nearly every med used in treatment and the only one that helped at all was leerica. Gaba didn't do anything for me and sa vella made me sick as a dog. Also if anyone knows of alternative treatments feel free to list um. Massage therapy seems to help me some.

 
hey...welcom to forum..

just wanted you to know since i suffer badley so bad im disabled..

i wanted you to know there are many chats about fibro and related..when it doubt use search function...

Im sorry your dealing wirh so much..i would chat but im off to bed in a minute...

 
sadminion said:
hey...welcom to forum..

just wanted you to know since i suffer badley so bad im disabled..

i wanted you to know there are many chats about fibro and related..when it doubt use search function...

Im sorry your dealing wirh so much..i would chat but im off to bed in a minute...
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Thank you very much. I will look into the chats. I'm so sorry you have to deal with this too. I hope you get some relief. Good night and sleep well!

 
I also suffer from fibro. There are times it flares up so bad I feel like I have the flu. All my muscles are     tender to the touch. My pain meds help some but when it flares up it is very painful. Sorry anyone has to deal with this disease.

 
this has been me the last few days...a few days ago i woke up in the middle of the night screaming in pain...omg i couldnt get up to pee....my husband carried me...

the bed hurt....its so unfair an whats stupid is some docs still think fibro doesnt exists /default_sad.png  i have it so bad it disables me.

I found no med really works at least for the long haul....deep tissue massage is great though who can afford that several times a week /default_sad.png

 
You know I am glad I cam across this, first I thought I was nuts...

I was diagonosed 2 yrs ago. Have small therapy but time, money and drug laws you know...

But the last week or so has been hell!! My lower thumb knuckles, neck, right foot big toe area , hip, left shoulder blade, both elbows and ankles are screaming with pain. 

I totally agree! I have never taken much stronger than a 30 rox but when it's bad .. You still feel it. I have a spa thank the lord. I work in the casual living industry. We sell spas high end outdoor/ indoor furniture, billiards,pools and did sell beds for a bit.

But sometimes I can't even get motivated to get in the spa! 

But sad onion I get it. Sometimes crawling is better than walking. I hate my feet right now they are swollen. Do u ever think the full moon effects shit? I just don't know why this last flair up has been o bad! Cant make a fist.. I have gut ate psoriasis too. So sprinkled in red dots at the moment.

But sounds like u are a bit worse off sister,I do love a good message.  I really want a hot rock one on my back ! 

 
Akup7ich said:
You know I am glad I cam across this, first I thought I was nuts...

I was diagonosed 2 yrs ago. Have small therapy but time, money and drug laws you know...

But the last week or so has been hell!! My lower thumb knuckles, neck, right foot big toe area , hip, left shoulder blade, both elbows and ankles are screaming with pain. 

I totally agree! I have never taken much stronger than a 30 rox but when it's bad .. You still feel it. I have a spa thank the lord. I work in the casual living industry. We sell spas high end outdoor/ indoor furniture, billiards,pools and did sell beds for a bit.

But sometimes I can't even get motivated to get in the spa! 

But sad onion I get it. Sometimes crawling is better than walking. I hate my feet right now they are swollen. Do u ever think the full moon effects shit? I just don't know why this last flair up has been o bad! Cant make a fist.. I have gut ate psoriasis too. So sprinkled in red dots at the moment.

But sounds like u are a bit worse off sister,I do love a good message.  I really want a hot rock one on my back ! 
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it is very real & you are not nuts. I personally think those of us that suffer from chronic pain are at higher risk because our nerve endings go crazy. When mine flares up I know it. My doctor says it is definitely real. I also have psoriasis also. I have it on my hands & have to get steroid shots. I think it could be related. I hope you have a compassionate doc. 

 
im in lots of pain..( ps, maybei am more of a sad onion then minion these days akup, hehe....:)

im thinking i may have to make a hospital run because the pain im in...i was supposed to get a letter today but the darn girl at the mg resort...put the name backwards...so now i may not get my love letter till monday,,:(

 
I hate that. I had a new guy at Walmart. I literally got around the counter and typed it for him. 

My spell check always changes sad minion to sad onion if I ont catch it. 

My uncle and a gret aunt have it. Same side of the family.  My uncle came across some research about how the skin is involved in other ways too. Like the transfer of pain signals to the nerves way more frequently than the average person. I will try to post a link about it.

 
fbro is  disease where all your nerves get the wrong signal and backfire,,and continue like in  CIRCLE...it goes around and around each time getting worse, unless we can get a med we tak to stop the horrible rotation....

basically all our nerves are damamged...

 
Thank you God I'm not alone in this. It feels line in just a ball of pain.  The diagnosis was really hard on me. 

 
My mom had for years and we never believed her… I hate to say that, but it's the truth.  I used to badger her about getting out of bed and just going along with her day like other people – I couldn't comprehend that that was too much for her to handle.

Now I've got it--I was diagnosed in 2009 (I was in my late 30s) and I can't get the GPs to take me seriously about it. I hate that.  people don't believe me just like I didn't believe my mom.

The doctor I left back in America before I moved to England began me on a drug called amiltryptaline.  It's also an antidepressant and medication used to help people fall asleep.  Apparently it does something for nerve pain, and I have been taking it for about five years now.  Don't know if it's doing anything amazing, but I don't want to get off of it.

I take cohdeene and deehachcee when things are bad.  And oxcees when it's really bad.  But after a while these meds stop working.  I'm going to have to wean myself off them someday.  But yet, my fibro is going nowhere.   It has set up permanent camp in my body and isn't budging.   

Work, kids, life has to go on and so I have to have constant pain relief if I want to be able to keep up with my family.   As cliche as it sounds exercise – even just stretching – does help. And so does having positive people around you. When my stress goes up--that's when I have a flareup.  If only the doctors would write scripts for diazepam for the rest of my family...maybe then they wouldn't stress me out so much!?

You're not alone.  It's important that you hear that. Believe it, especially when things are at their worst.  

 
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I am so glad I found this thread,  I just got diagnosed today.  I have been seeing a new Rheumatologist for Raynaud's and Discoid Lupus.  I told him that I have episodes where I ache all over and feel like I have the flu and he diagnosed me with fibromyalgia.  I guess I am glad that some one finally listened to me as I have been complaining to my primary for years about these symptoms, and even went to the ER once when it got real bad.    I have been ordering Tr@amps for awhile and they seem to help take the edge off.  The Dr. prescribed Gabas which I have never taken so we shall see.  I am a recovering alcoholic so I know I need to be careful.  The pain and discomfort is pretty awful though.  Does anyone feel like they want to crawl out of their skin?  Well I am glad I'm not alone.  Any advice would be appreciated.

 
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Missy50 said:
I am so glad I found this thread,  I just got diagnosed today.  I have been seeing a new Rheumatologist for Raynaud's and Discoid Lupus.  I told him that I have episodes where I ache all over and feel like I have the flu and he diagnosed me with fibromyalgia.  I guess I am glad that some one finally listened to me as I have been complaining to my primary for years about these symptoms, and even went to the ER once when it got real bad.    I have been ordering Tr@amps for awhile and they seem to help take the edge off.  The Dr. prescribed Gabas which I have never taken so we shall see.  I am a recovering alcoholic so I know I need to be careful.  The pain and discomfort is pretty awful though.  Does anyone feel like they want to crawl out of their skin?  Well I am glad I'm not alone.  Any advice would be appreciated.
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The pain really sucks, I know. I too am diagnosed with it and it does seem PK's help with it however there's always better alternatives apposed from opies. Kicking opies is a whole different story, so perhaps talk to your healthcare professional regarding treatment for it. 

It does indeed feel like you want to crawl out of your skin or something along those lines. It's what I can only describe as third-degree burn pains in the muscles, it really honestly isn't a fun experience and nobody here should feel alone. I'm glad @Aloneoncloud9 opened this thread for discussion seeing we're all starting to come together as a whole to show nobody here is alone, we have the same problems and we can help eachother through anything. 

Regarding advice, the best advice I can give or anyone for that matter is discuss it further with your healthcare professional seeing it's an early diagnosis. You may need to see a specialist to get on the right meds to treat it, but try to avoid self-medicating yourself. It's very dangerous and I'd hate to see anyone here get into any harm due to such a thing.

Regards,

-VII

 
sadminion said:
hey...welcom to forum..

just wanted you to know since i suffer badley so bad im disabled..

i wanted you to know there are many chats about fibro and related..when it doubt use search function...

Im sorry your dealing wirh so much..i would chat but im off to bed in a minute...
Click to expand...
That is horrible. I am so sorry

 
To all of the last 5 or so post... I  am with u. Sometimes when I describe it people my pain they cock their head with a funny look...

ad one mentioned above the burning sensation. I get it a lot. A.m is the worst thing ever. Sometimes I roll myself over the edge of bed to floor and sit then crawl pull up and stand . I tell people sometimes the stiffness feels like those Indian burns we use to do as kids. 

I agree with the hot and cold. My pain shifts too. This week it's in my thumb joints hips ,big toe, neck and elbows. 

Amkle pain is the worst. I take an old school anti inflammatory called imfloc ? Something in shifts but it makesy blood pressure rise. 

As all of u so glad to listen and hear and not feel like it's all in my mind.

oh theuscle relaxer zana flex so helps b4 bed and if I wake up in middle of night with shakes

 
I have found that Kratom helps me during a flare. Red is suppose to help inflammation but I'm an opposite and white helps me

 
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  3. xenxra @ xenxra: every day is friday
  4. 3 @ 3ak: @xenxra damn shame, can't find any of the rc stims
  5. xenxra @ xenxra: @3ak mostly, will prob be gone entirely by end of summer imo
  6. F @ frozenSR17: hope everyone has a nice start 2 their weekend. "keep it one hunnid," as someone once said to me
  7. 3 @ 3ak: 4f-mph dried up?
  8. xenxra @ xenxra: pretty sure black also went rogue sometime late last year
  9. Strawhat7 @ Strawhat7: Yo, whatever happened to Mr. Black? Just got a rando email from him after ghosting me like a year and a half ago
  10. LW815 @ LW815: Know what’s really going on in somebody else’s head or how much they’re really dealing with and feel like they’re left with no other options. Been a very sad few days but 2 complete (irl anyway) strangers cared enough about what I was going through to talk to me about it, though they owe me nothing and have no reason to help my personal pain other than the kindness in their own hearts. Just shows that this place is a real community, not just a forum of people who only care about themselves.
  11. LW815 @ LW815: Was nodding in/out the entire time writing those shouts and spparently was fully out sending the last one lol. But II find it ‘uplifting’ as two people I’ve never actually met and only know the others online presence through subscriptions, who I have a better chance of getting a handy J from Jesus Christ himself, both were so quick to share their own experience and wise words and assurances that things will look up and not to feel guilty or be mad at somebody for going that route - as you never
  12. xenxra @ xenxra: @hotdog45 meh, same difference. they both got blacklisted on here. wouldn't be the first time a rogue shop sent out unsolicited comms after the fact.
  13. MOD @ MOD: Hello @everyone
  14. LW815 @ LW815: Own personal experience with this kind of this type kind of situation and sympathized with my pain when I really just needed somebody to talk to. Both went out of their way to help a stranger in a time of need when I really needed somebody, and body to talk to. MM
  15. LW815 @ LW815: Sent a simple conf email and I just dropped a ball on them. I really just needed to let it out, didn’t expect them to reply in such a thoughtful way that it drastically changed the rest of my day and mindset for the bette . Above and beyond - and the last night while chatting with another that I knew had at least once one child,, so i wished them a belated happy Father’s Day, which again caused me to spill it all to them and again received the most thoughtful and kind response, as well as their-
  16. LW815 @ LW815: They didn’t need to. They could have just continued on with the nature or the main purpose of what the relationship between us is, I didn’t really have anybody else to let it out to at the time and they both went far beyond what I’d expect. Not that I’d assumed they’re cold/A-holes - it was just a lot from somebody who’s technically a competent stranger. A very close friend of mine committed suicide on Father’s Day and iwas emotionally wrecked witih nobody to talk to, and the first author just
  17. LW815 @ LW815: @Mokachin0 not really uplifting in the normal sense, but two popular authors on here took the time out of their likely very busy days to not only read my massive walls of text, but both also replied with the most kind, thoughtful and positive responses when I randomly dumped my personal problems into their laps
  18. H @ hotdog45: I have never ordered mags from him I meant
  19. H @ hotdog45: @xenxra I thought that too but after digging on the site it is chemical cabinet. Either way I deleted the email. I have ordered mags from him, but I thought you guys should know he's reaching out to people again. After reading the thread if anyone gets an email from him I would suggest doing the same.
  20. xenxra @ xenxra: @hotdog45 isn't that ghost? he threw his rep in the trash and got blacklisted
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