1. < Fibromyalgia

Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

oh_suzie_q | @oh_suzie_q | Feb 21, 2018
In reply to @parus "Well all of you people living in fibro land encouraging you to do your best and..." + (show)
@parus

Well all of you people living in fibro land encouraging you to do your best and what is in your comfort zone. It may mean a fairly lonely existence, but certainly (speaking for myself) better than flares. I do not even ask for pain medication as where I am it is viewed as drug seeking. I stay with the same primary care person as too much changing around or any at all now is viewed as drug seeking. Take an OTC is what they recommend. No need as if it does not help why take it-even as prescribed. In the area I live in prescribing of opioids is rare. Depression and PTSD are in my chart for all to see-it is the first thing in my chart. How far does anyone trying to get help for pain get taken seriously I am told to talk to a therapist. I have a UTI and still trying to see the PCP. Still waiting on a cancellation. So yes, in a fibro flare. There are times when I go to bed and hope not to awaken to another day. As you can see I have and hoping to get some help for the UTI. I don't even mention fibro as bels and whistles go off in the doctor's head that spell out drug-seeker when I have not once asked for them. They are firing patients now for even asking. I do see a pain specialist for trigger point injections which help for a few days. Insurance will only pay for every 6 months even though they only last a week or so. I am allergic to steroids and get shots of a numbing agent that help the muscles relax. So yes, I am rather discouraged right now. 🙁

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Hi Parus, have you ever tried a doctor of Oriental Medicine? I see an MD with a Ph.D. and is an Anesthesiologist Dr. by profession! In all of my years of being like this, she has brought so much relief that I thought was never possible. Homeopathic! Well, some days I need extra help! She provides this and so much much more! The only drawback is that insurance companies DO NOT value these doctors nor their methods. Sad isn't it! Don't know where you are; but, let me know if you want some info to research. I went with an open mind and came all the better! Have referred many to her!! She is great!

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Parus | @parus | Feb 21, 2018
In reply to @parus "Well all of you people living in fibro land encouraging you to do your best and..." + (show)
@parus

Well all of you people living in fibro land encouraging you to do your best and what is in your comfort zone. It may mean a fairly lonely existence, but certainly (speaking for myself) better than flares. I do not even ask for pain medication as where I am it is viewed as drug seeking. I stay with the same primary care person as too much changing around or any at all now is viewed as drug seeking. Take an OTC is what they recommend. No need as if it does not help why take it-even as prescribed. In the area I live in prescribing of opioids is rare. Depression and PTSD are in my chart for all to see-it is the first thing in my chart. How far does anyone trying to get help for pain get taken seriously I am told to talk to a therapist. I have a UTI and still trying to see the PCP. Still waiting on a cancellation. So yes, in a fibro flare. There are times when I go to bed and hope not to awaken to another day. As you can see I have and hoping to get some help for the UTI. I don't even mention fibro as bels and whistles go off in the doctor's head that spell out drug-seeker when I have not once asked for them. They are firing patients now for even asking. I do see a pain specialist for trigger point injections which help for a few days. Insurance will only pay for every 6 months even though they only last a week or so. I am allergic to steroids and get shots of a numbing agent that help the muscles relax. So yes, I am rather discouraged right now. 🙁

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@oh_suzie_q Insurance will not cover homeopathic. Thanks for your input.

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oh_suzie_q | @oh_suzie_q | Feb 21, 2018
In reply to @parus "Well all of you people living in fibro land encouraging you to do your best and..." + (show)
@parus

Well all of you people living in fibro land encouraging you to do your best and what is in your comfort zone. It may mean a fairly lonely existence, but certainly (speaking for myself) better than flares. I do not even ask for pain medication as where I am it is viewed as drug seeking. I stay with the same primary care person as too much changing around or any at all now is viewed as drug seeking. Take an OTC is what they recommend. No need as if it does not help why take it-even as prescribed. In the area I live in prescribing of opioids is rare. Depression and PTSD are in my chart for all to see-it is the first thing in my chart. How far does anyone trying to get help for pain get taken seriously I am told to talk to a therapist. I have a UTI and still trying to see the PCP. Still waiting on a cancellation. So yes, in a fibro flare. There are times when I go to bed and hope not to awaken to another day. As you can see I have and hoping to get some help for the UTI. I don't even mention fibro as bels and whistles go off in the doctor's head that spell out drug-seeker when I have not once asked for them. They are firing patients now for even asking. I do see a pain specialist for trigger point injections which help for a few days. Insurance will only pay for every 6 months even though they only last a week or so. I am allergic to steroids and get shots of a numbing agent that help the muscles relax. So yes, I am rather discouraged right now. 🙁

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nope, they don't recognize it as a "cure" for the condition. very sad! Sometimes insurance will pay for the office visit; but, not the treatment. I found it helps so much, I pay! Rids my pain for long periods of time with just a little help, as needed.

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lioness | @lioness | Feb 21, 2018

I wish they did pay for homeopathic but not even herbal medicine.It is a shame but the pharmaceutical companies are in for profits not holistic medicines

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2 replies
lioness | @lioness | Feb 21, 2018
In reply to @parus "Well all of you people living in fibro land encouraging you to do your best and..." + (show)
@parus

Well all of you people living in fibro land encouraging you to do your best and what is in your comfort zone. It may mean a fairly lonely existence, but certainly (speaking for myself) better than flares. I do not even ask for pain medication as where I am it is viewed as drug seeking. I stay with the same primary care person as too much changing around or any at all now is viewed as drug seeking. Take an OTC is what they recommend. No need as if it does not help why take it-even as prescribed. In the area I live in prescribing of opioids is rare. Depression and PTSD are in my chart for all to see-it is the first thing in my chart. How far does anyone trying to get help for pain get taken seriously I am told to talk to a therapist. I have a UTI and still trying to see the PCP. Still waiting on a cancellation. So yes, in a fibro flare. There are times when I go to bed and hope not to awaken to another day. As you can see I have and hoping to get some help for the UTI. I don't even mention fibro as bels and whistles go off in the doctor's head that spell out drug-seeker when I have not once asked for them. They are firing patients now for even asking. I do see a pain specialist for trigger point injections which help for a few days. Insurance will only pay for every 6 months even though they only last a week or so. I am allergic to steroids and get shots of a numbing agent that help the muscles relax. So yes, I am rather discouraged right now. 🙁

Jump to this post

Sorry your down ,been there also ,when I have a UTI I just mention my symptoms that's all and so far the Dr. prescribes for me ,but the last couple of months my fibromyalgia has gotten worse ,going tomorrow to my rheumatologist .

REPLY
doxyjune | @doxyjune | Feb 21, 2018
In reply to @pitagirl "I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI...." + (show)
@pitagirl

I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI. It was not even recognized as a disease in 2003, I can hear where you are coming from I was there. One being alone all day is probably causing you some depression I did but there is the help. Also, all the trigger points i have 16. I took Norco 6x for 6 yrs until i realized that those drugs were killing me. Had my doctor put me on Tramadol 3xday only 50 mg and savella 100mg 2xd. I know you say you don\'t drive but if you want to know what i did you would have to figure out how to get there. I joined the gym aqua therapy is a blessing your weightless. I even got myself into the gym after the therapy and took it slow. I found the light impact very slowly to start. I felt better. Did not help with the sleep issues we do not go into Rem sleeping crazy. Hope my words helped you.

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Hi @jmmb, Thank you for your post. Lots of stressful events for you. I know what you mean about washing your hair. I have experienced that also. I am on duloxetine as well. Just at 20mg -- waiting and hoping it will kick in. I just received a saliva test - for many years I was flat lined on the results. That is why I was on hydrocortisone and it helped a lot but made me pre-diabetic. But my last saliva test a few months ago showed cortisol in the A.M. so maybe the adrenals are healing. You mention that you have CFS. Are there any tests for that syndrome? Thank you again for your response. I truly appreciate it.

REPLY
jmmb | @jmmb | Feb 21, 2018
In reply to @pitagirl "I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI...." + (show)
@pitagirl

I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI. It was not even recognized as a disease in 2003, I can hear where you are coming from I was there. One being alone all day is probably causing you some depression I did but there is the help. Also, all the trigger points i have 16. I took Norco 6x for 6 yrs until i realized that those drugs were killing me. Had my doctor put me on Tramadol 3xday only 50 mg and savella 100mg 2xd. I know you say you don\'t drive but if you want to know what i did you would have to figure out how to get there. I joined the gym aqua therapy is a blessing your weightless. I even got myself into the gym after the therapy and took it slow. I found the light impact very slowly to start. I felt better. Did not help with the sleep issues we do not go into Rem sleeping crazy. Hope my words helped you.

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Hi @doxyjune your welcome. There unfortunately is no formal test for cfs. It is diagnosised by exclusion and having qualifying symptoms for at least I think 3 or 6 months. It's changed so many time

REPLY
jmmb | @jmmb | Feb 21, 2018
In reply to @pitagirl "I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI...." + (show)
@pitagirl

I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI. It was not even recognized as a disease in 2003, I can hear where you are coming from I was there. One being alone all day is probably causing you some depression I did but there is the help. Also, all the trigger points i have 16. I took Norco 6x for 6 yrs until i realized that those drugs were killing me. Had my doctor put me on Tramadol 3xday only 50 mg and savella 100mg 2xd. I know you say you don\'t drive but if you want to know what i did you would have to figure out how to get there. I joined the gym aqua therapy is a blessing your weightless. I even got myself into the gym after the therapy and took it slow. I found the light impact very slowly to start. I felt better. Did not help with the sleep issues we do not go into Rem sleeping crazy. Hope my words helped you.

Jump to this post

Sorry I don't know what happened. I didn't hit post yet I wasn't done. Anyway I was diagnosed about 22 yrs ago. I had mono, Epstein Barr virus and then cfs. I went to a university that was doing research on CFS so they had tested me for everything but luckily it was free. Problem was I was guinea pig as well didn't know if I was getting placebo or help that sort of thing. That's when I left and went to a pcp. I know I took the Cymbalta that helped my aches and pains the fibromyalgia piece of it. I take modafinil to keep me awake.

REPLY
lioness | @lioness | Feb 21, 2018
In reply to @pitagirl "I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI...." + (show)
@pitagirl

I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI. It was not even recognized as a disease in 2003, I can hear where you are coming from I was there. One being alone all day is probably causing you some depression I did but there is the help. Also, all the trigger points i have 16. I took Norco 6x for 6 yrs until i realized that those drugs were killing me. Had my doctor put me on Tramadol 3xday only 50 mg and savella 100mg 2xd. I know you say you don\'t drive but if you want to know what i did you would have to figure out how to get there. I joined the gym aqua therapy is a blessing your weightless. I even got myself into the gym after the therapy and took it slow. I found the light impact very slowly to start. I felt better. Did not help with the sleep issues we do not go into Rem sleeping crazy. Hope my words helped you.

Jump to this post

Hi Jim I also had Epstein Barr,mono I had the rash with it then 20 yrs later ended up with fibromyalgia.Mine I think is getting worse ,seeing rheumatologist tomorrow.I'm now experiencing cfs .

REPLY
lioness | @lioness | Feb 21, 2018
In reply to @pitagirl "I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI...." + (show)
@pitagirl

I read your story. I was dx: in 2003 with Fibro and 2006 approved for SSI. It was not even recognized as a disease in 2003, I can hear where you are coming from I was there. One being alone all day is probably causing you some depression I did but there is the help. Also, all the trigger points i have 16. I took Norco 6x for 6 yrs until i realized that those drugs were killing me. Had my doctor put me on Tramadol 3xday only 50 mg and savella 100mg 2xd. I know you say you don\'t drive but if you want to know what i did you would have to figure out how to get there. I joined the gym aqua therapy is a blessing your weightless. I even got myself into the gym after the therapy and took it slow. I found the light impact very slowly to start. I felt better. Did not help with the sleep issues we do not go into Rem sleeping crazy. Hope my words helped you.

Jump to this post

Rev Billy Graham passed on to his home today he was 99. I'm sure Jesus said well done my good @faithful servant

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