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luvmychihuahuas

Fibromyasia

Posted by @luvmychihuahuas in Just Want to Talk, Feb 3, 2012

Any one with this condition going through serious pain right now???
I have been dealing with this for over 20 years & am really having serious pain the last several days...

Tags: cronic pain

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luvmychihuahuas

Posted by @luvmychihuahuas, Feb 3, 2012

Yes, it's bad--I can't even concentrate long enough to spell it correctly--sorry Fibromyalsia..

janasr

Posted by @janasr, Feb 4, 2012

I started having symptoms after hysterectomy 7 mos ago. Would love to share and listen to your experiences. Message me

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 4, 2012

Sorry to hear that you have to go through this also. I have been dealing with it for over 25 years. When I first started with the pain, I was tested for MS, had milograms, spinaltaps, you name it & I had it. 25 years ago there was no name for fibromyalsia. I was eventually diagnosed with myofibrositis, fibromyositls, whatever they could think of, I guess..... I guess it will be back to PT for me, I have tried everything else that I have used over the years, including doubling up on my fentynal patch & 750 vicodens.... ROM is not working, heat is not working, cold is not working, my infrared lamp is not working. Wish there was a miracle out there.... Sorry to sound so down--I'm just not generally in so much pain.

lucyanna

Posted by @lucyanna, Feb 5, 2012

Hi, I'm also sorry that you have to go through all this pain. I was diagnosed 30 years ago at Mayo and like luvmychihuahuas, that was back when they still called it fibromyositis. I don't know if it is the weather or stress or what, but I, too, have been going through so much pain, fatigue, and weakness over the last several months. Unfortunately, I can't take any of the medicaitons they now have for fibromyalgia, I don't tolerate them. I'm doing my best not to be too crabby around here, but somedays when I can't do the stuff I want and/or need to do I do get a little frustrated. Like I said, I've had it for 30 years and I was very active during most of those years, working as a nurse, raising a family, taking care of other family members etc., Now, over the last few months, I'm lucky if I get showered and dressed on a daily basis. It's been at least 5 years since I've had a flare like this - the good news is, it will eventually pass and I will be back to my normal, achy, ornrey, active self.

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 5, 2012

I feel exactly the same, Lucy Anna. Do you live in WI? I'm kind of thinking that it is the damp weather that we have been having--not sure, but that is my guess. It is so frustrating when you are used to being active & get to the point where taking a shower is a chore. Yesterday i had to force myself to shower & run to pick up prescriptions & a few groceries. It was a miserable trip. Hopefully tomorrow will be a better day.... I really wish that I could afford to move to a tropical climate. Whenever I had taken trips to Mexico, within a day, the pain almost disappears. It has been several years for me also since I have had a flare up this bad. Tomorrow my plan is to call my Dr. & see if I can get a referral to go back to PT. That will be my last resort to get on the road to feeling better. Thank goodness that my kids are grown & don't have to deal with my crabbiness right now....!! I too worked & raised a family during the whole time. Did you go through the injections? I did that also & it just created more spasms, which in turn caused more pain. Wouldn't you think that there would be something that would help people like us...

janasr

Posted by @janasr, Feb 18, 2012

Do u know anything about filing for disability benefits? It is becoming impossible for me to work due to my fibromyalgia symptoms. I am considering filing for disability but It is very confusing. I think I am reading that
you can't be working while waiting to be approved? Do you know if that is correct? I just don't know how to survive without a check for awhile. seems like a no win situation

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anon07307276

Posted by @anon07307276, Feb 18, 2012

I hear you that is my feelings too. Everything will be okey .Try every possible way .

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 19, 2012

I am quite sure that you can be working when you file for a disability. Good luck with everything. I was a state employee for 34 years & retired @ 55 because I was no longer able to work because of the pain & our present guv's take-aways. Let me know how your disability works out .

line

Posted by @line, Feb 4, 2012

Hi, I was diagnose with fibromyalgia. I take as needed pain killers and my doctors are telling me to go out everyday and walk. I've not been able to do this yet. But I also have Lupus, so pain I know about and when it's too painful I use ice and pain killers. Good luck, hope this helps.

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 4, 2012

I do the same. Thanx for your suggestions; however, right now nothing is helping. I have been dealing with this conditions for 25 + years & it has not been this bad in many, many years. I doubled up on my fentynal patch today hoping that would help, but doesn't seem to be doing anything. Looks like I will have to see if I can get back into Pt next week. NOTHING else is working...

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anon07307276

Posted by @anon07307276, Feb 18, 2012

My Cymbalta use to work for me it helps my depression anxiety and pain it seems it's not working . I will try to find another solution take care hang in there ...

anon79545058

Posted by @anon79545058, Feb 10, 2012

Hello,I feel your pain . Im sorry .Im have tingling in my body I have it too. I have chronic illness. Doctor said try exercise walking ,swimming , yoga even if your in pain /fatigue try it anyways drink lots of water . This is a frustrating illness and I'm angry I have ringing in the ear too .. I just have to think god will ease our pain. We just have to fight and continue to find solutions to our pain .Take always.

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dawnlowry

Posted by @dawnlowry, Feb 13, 2012

yes.have had many years experience dealing with pain of fibromyalgia.I have something that made a big difference for me and gave me some sort of quality of life.

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 23, 2012

What made the difference for you?

powerofpositive

Posted by @powerofpositive, Feb 16, 2012

Just wondering if your doc has done any further testing lately? Perhaps there is other Rhematology issues that have surfaced in addition to the Fibro. Just a thought. Maybe discuss this and have the blood tests...I was misdiagnosed with Fibromylgia and I kept stating I dont fit the criteria but was brushed off. Once I went to the Rheumatologist I found help with properly diagnosing the issues I was having. Good Luck.

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 23, 2012

Thank you, but yes, I have been tested for everything from MS to you name it...

redocean

Posted by @redocean, Feb 23, 2012

hi luvmychihuahuas, I am in bed this am after getting dressed to go meet friends for some volunteer work and having to go home discouraged and get into a hot shower nearly burning my backside because I can't get relief today. I am new to this stie but have become friends with one other person. I hear what you are saying. my story is similar to yours with diagnosis going on for a long time before they could reach a diagnosis...They too checked me for MS Lupus and Rheumatoid Arth, I finally got sent to two pain clinics and they began giving me different pain meds that didn't do much but take edge off...They bumped me up to Patch w norco for break thru pain. It was a diff. adjustment to stablize but when injections didn't offer much relief to the S.I.Joints they diagnosed Pelvic Pain & sent me to a female specialist for this is done from the inside out. ...this has flared everything again, and Im not so sure i can hang with this.I hear your pain and I empathize completely with what you are going thru. I find that one of the most frustrating things is having to get up and down from different positions and keep moving/resting. it is impossible to be in one place for too long and get anything done. Isolation is the other prob and then lack of friends getting it.
I was telling a friend this morning why i had to go home and he was sympathetic then a min later was asking if i was going to be there this evening. they just don't get it.
Please write to me I will take everything you say seriously and w compassion.

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 23, 2012

Redocean, What did they diagnose you with?

tonny239

Posted by @tonny239, Feb 24, 2012

i'm in pain 24-7

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 24, 2012

I'm assuming that you had back surgeries. That is really horrible to have pain 24-7 after having surgery. I feel for you 'cuz I do know what that is like & I wouldn't wish it on anyone.

tonny239

Posted by @tonny239, Feb 24, 2012

3 surgery done so far

blessedbynine

Posted by @blessedbynine, Feb 24, 2012

Although I've been living with fibro for a LONG

blessedbynine

Posted by @blessedbynine, Feb 24, 2012

OOPS...TIME, I've never been in a chat room (or whatever this is). All know is that I ned help. I am hurting so bad and so terribly sleepy that I just want to sleep all day. Not possible with 9 kids, 4 grandkids and all those other 'life goes on" things we always have to do. I was on the fentanyl patch for quite a while and it really helped with the pain. My problem with that was the way it made me feel like drug junkie, needing my next fix when I'd forget to change the patch on time. I finally gave up on it because of my severe dependency on it. I was on Celebrex and felt wonderful on it. Then, all the commercials on tv with the warning about possible dangers and my husband wanted me off that. i haven't been taking anything but Norco, prescribed for migrains. It helps the headaches some and helped very little on the fibro. I called a local dr and said I need something more because I can't function like this. (My regular dr has been out of the office for two months because she had pneumonia then got a fungal infection in her lungs...) Good ole dr gave me Oxycodone and 2 mg xanax to be taken 4 times a day. I don't know if i hurt or not cause I was so out of it, doing things I don't even remember. AND I WAS DRIVING!!! Anybody out there that can tell me some mircle drug that helps but still lets you function and carry on with life? PLEASE HELP ME.

luvmychihuahuas

Posted by @luvmychihuahuas, Feb 24, 2012

Maybe the Fentynal patch you were on was too strong. Start out with the 25 & work up if you need to. I am on the 75 patch along with Flexeril & vicoden 750s. There are times when that doesn't help either. No matter what you take, it will most likely have some side effect, but I cannot live w/ the pain so, I prefer the
possible side effects that I may have from the meds. Everyone reacts different to meds & you need to find what works for you. For years, I played musical meds with the Drs. trying to find what will work.

cheryldotson

Posted by @cheryldotson, Oct 14, 2012

You need to ask your doc to run a simple Blood Test for the EBV Virus...it's like severe Momno (CFS...or Chronic Fatigue Syndrom) and goes hand in hand with FMS. Any Changes in weather or routines will flair up FMS..and most drugs have an Adverse Effect, so your hubby was right about not wanting you on just any med the give you. Thay still do not know the why and the how to fix....so we are test subjects. I use a heat pad under my shoulders every nite. During the day I use lots of either menthol rubs "OR" opt for Thermal Care Heat pads as they worrk for up to10 hours. I put the neck ones....One across each shoulder next to both sides of the neck and the I take the x=large back one and put it just under the other two to get the knots under the shoulder blades. I then wrap it around my chest and hook it in front witha soft bra holding all in place. My hubby helps me put them on as I cannot reach back there..It is the best long lasting relief I get without any meds. Do not use with rubs...it will burn your skin, but...you can wear them out under your clothes, or to bed for a good nites rest...the effects last untill your muscles bunch up again.

cheryldotson

Posted by @cheryldotson, Oct 12, 2012

I don't know if you are still there...your posts are 8 months old, but I am new to this site and wanted you to know that there is someone else here. I do not have anyone to talk to who can relate to me and I am currently in a state of mental exhaustion. I have played musical docs and meds for 21 years....and now am diagnosed SSI as of 2003. The good news is that no one can play musical meds, the bad news is...no-one can help me or wants to deal with me cause I cannot be curred. I am in the empty space between sick, but untreatable.It's a lonely feeling...let me know if you are still there...K!

luvmychihuahuas

Posted by @luvmychihuahuas, Oct 14, 2012

Sorry to hear that you are going thru such a hard time. What was your diagnosis?

cheryldotson

Posted by @cheryldotson, Oct 14, 2012

FMS, CMS, IBS, AXIETY DISORDER, DEPRESSION,HIVES ans SEISURES. Sensitivity to light, noise, smells, soaps, plants and meds. It began with the Ebstein Barr Virus....

luvmychihuahuas

Posted by @luvmychihuahuas, Oct 14, 2012

The fact that you are sensitive to meds makes your medical issues more complex. I wish that I had a magical solution for you. Have you looked into any of the natural remedies? Have you ever gone to Mayo Clinic in Rochester, MN? They are very good there & take more tests than a GP can..

cheryldotson

Posted by @cheryldotson, Oct 14, 2012

It is really hard to handle the pain some times..but, worse when know one knows what you go thru. Do you have support?

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