Fighting Fibro

[Aloneoncloud9]

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.

 

[sadminion]

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...

 

[Aloneoncloud9]

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...

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!

 

[nickiean]

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.

 

[sadminion]

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

 

[Akup7ich]

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 ! 

 

[nickiean]

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 ! 

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. 

 

[sadminion]

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,,

 

[Akup7ich]

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.

 

[rosealso]

I hope this is ok to put here. May cheer a few of us up? Long overdue but now at least it is a proper dx, Yeah!

View attachment 1025

 

[sadminion]

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...

 

[ninja2000]

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. 

 

[lightningseed5]

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.  

 

[The guy]

That pain has to be terrible. I hope everyone with that pain finds peace

 

[Missy50]

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.

 

[VII]

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.

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

 

[KittyPurffect]

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...

That is horrible. I am so sorry

 

[Akup7ich]

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

 

[SkyAngel]

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