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.

Parus | @parus | Feb 25, 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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@virtuous69 Nor can I. And it is okay.

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Parus | @parus | Feb 25, 2018
In reply to @grandmar "I have found that the doctor will advocate for the kind of medicine he/she practices. I..." + (show)
@grandmar

I have found that the doctor will advocate for the kind of medicine he/she practices. I found a great pain doc. When I told him I decided to have surgery, he did not appear to be very happy about it. When I spoke with the neurosurgeon about continuing shots on my lumbar spine, he said he had a few ideas we'd talk about after the cervical surgery.
So, you, as a patient, have to do your own research so that you can make a semi-informed decision before you see the experts. Don't be afraid to ask questions.
We have to be our own advocates.
Good luck to us all!!!
ronnie

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@lioness Going under the knife is not something I want to think about or even discuss with a doctor. Thing is we mostly hear about the negative outcomes. So far surgery has not even been mentioned by a doctor and I do not plan to mention thus. I may have mentioned surgery somewhere.

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grandmaR | @grandmar | Feb 25, 2018
In reply to @grandmar "I have found that the doctor will advocate for the kind of medicine he/she practices. I..." + (show)
@grandmar

I have found that the doctor will advocate for the kind of medicine he/she practices. I found a great pain doc. When I told him I decided to have surgery, he did not appear to be very happy about it. When I spoke with the neurosurgeon about continuing shots on my lumbar spine, he said he had a few ideas we'd talk about after the cervical surgery.
So, you, as a patient, have to do your own research so that you can make a semi-informed decision before you see the experts. Don't be afraid to ask questions.
We have to be our own advocates.
Good luck to us all!!!
ronnie

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@parus
I certainly understand your reluctance to go for surgery. I have been living with this for sooooooooooo many years. The last 5 years have been especially difficult! I have been retired for 5 years and I have NO quality of life. I am still relatively young at 63 (in a week) and would like to enjoy the remainder of my life doing all the things I couldn't when I worked.

I have tried and exhausted all my options. I have opted for surgery. Wednesday I will be having 2 discs from my cervical spine removed and replaced with 2 artificial ones. It is my hope and the hope of the surgeon that this surgery will eliminate the pain in my neck (no, not the hubby), the pain and tingling in my arms, the pins and needles, as well as the weakness in my hands. This is just the start. I hope this will be all I need for the cervical spine. The lumbar, hopefully, will be next.

My son and daughter-in-law are nuclear med techs. For a long time they have been adamant about not having lower back surgery because they see patients all the time with failed surgeries. Not so much with the cervical spine.

I am desperate and willing to try just about anything at this point. I cannot live in constant pain and I don't want to live on pain meds. I don't want to be a statistic for being hooked on opioids.

Well, that is just MY opinion.
ronnie

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Parus | @parus | Feb 25, 2018
In reply to @grandmar "I have found that the doctor will advocate for the kind of medicine he/she practices. I..." + (show)
@grandmar

I have found that the doctor will advocate for the kind of medicine he/she practices. I found a great pain doc. When I told him I decided to have surgery, he did not appear to be very happy about it. When I spoke with the neurosurgeon about continuing shots on my lumbar spine, he said he had a few ideas we'd talk about after the cervical surgery.
So, you, as a patient, have to do your own research so that you can make a semi-informed decision before you see the experts. Don't be afraid to ask questions.
We have to be our own advocates.
Good luck to us all!!!
ronnie

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@grandmar There is really no need to have a surgery of any type. DDD of neck and lumbar are not something I would want to go through even at 66. My pelvis is twisted from having 1 leg 1/2 inch shorter since I was 20 from a broken femur in a horse accident. I also have developed scoliosis because of this. Throw fibromyalgia into the mix surgery would be nonsensical for me. Currently on an antibiotic for UTI which has me in a fibro flare. I apologize for any confusion about surgery and for some it could mean more quality of life. Wishing you the best in what you decide.

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grandmaR | @grandmar | Feb 25, 2018
In reply to @grandmar "I have found that the doctor will advocate for the kind of medicine he/she practices. I..." + (show)
@grandmar

I have found that the doctor will advocate for the kind of medicine he/she practices. I found a great pain doc. When I told him I decided to have surgery, he did not appear to be very happy about it. When I spoke with the neurosurgeon about continuing shots on my lumbar spine, he said he had a few ideas we'd talk about after the cervical surgery.
So, you, as a patient, have to do your own research so that you can make a semi-informed decision before you see the experts. Don't be afraid to ask questions.
We have to be our own advocates.
Good luck to us all!!!
ronnie

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Thank you for your best wishes. I wish the best for you, too!
ronnie

REPLY
lioness | @lioness | Feb 25, 2018
In reply to @grandmar "I have found that the doctor will advocate for the kind of medicine he/she practices. I..." + (show)
@grandmar

I have found that the doctor will advocate for the kind of medicine he/she practices. I found a great pain doc. When I told him I decided to have surgery, he did not appear to be very happy about it. When I spoke with the neurosurgeon about continuing shots on my lumbar spine, he said he had a few ideas we'd talk about after the cervical surgery.
So, you, as a patient, have to do your own research so that you can make a semi-informed decision before you see the experts. Don't be afraid to ask questions.
We have to be our own advocates.
Good luck to us all!!!
ronnie

Jump to this post

Good luck I wish you the best I want to say one thing when I experienced pins@needles in my arms ,hands I removed my pillow ,just slept flat and they went away ,guess my pillow was pinching the neck nerves I was relieved that's all it was so now have a small pillow at night

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 25, 2018
In reply to @grandmar "I have found that the doctor will advocate for the kind of medicine he/she practices. I..." + (show)
@grandmar

I have found that the doctor will advocate for the kind of medicine he/she practices. I found a great pain doc. When I told him I decided to have surgery, he did not appear to be very happy about it. When I spoke with the neurosurgeon about continuing shots on my lumbar spine, he said he had a few ideas we'd talk about after the cervical surgery.
So, you, as a patient, have to do your own research so that you can make a semi-informed decision before you see the experts. Don't be afraid to ask questions.
We have to be our own advocates.
Good luck to us all!!!
ronnie

Jump to this post

Great idea....was recommended to me after back surgeries to keep the spin in alignment. I still get the morning zapper electric shock pain about 4 am. I also think it might be initiated by movement in my sleep that disturbs the moves. My surgeon said that the whole body gets ready to wake up about that time and so the nerves are more sensitive.

REPLY
Texas Freedom | @oregongirl | Feb 25, 2018
In reply to @grandmar "I have found that the doctor will advocate for the kind of medicine he/she practices. I..." + (show)
@grandmar

I have found that the doctor will advocate for the kind of medicine he/she practices. I found a great pain doc. When I told him I decided to have surgery, he did not appear to be very happy about it. When I spoke with the neurosurgeon about continuing shots on my lumbar spine, he said he had a few ideas we'd talk about after the cervical surgery.
So, you, as a patient, have to do your own research so that you can make a semi-informed decision before you see the experts. Don't be afraid to ask questions.
We have to be our own advocates.
Good luck to us all!!!
ronnie

Jump to this post

Does anyone have hot patches on your skin? Moves around. The only way it is relieve is lotion. Yes my skin gets dry easy. But this drives me nuts. I tried an alergy med and it seems to quiet it a bit But, it is endless. Sometimes on one leg and then the other. My arms also. Back of knees.

REPLY
oh_suzie_q | @oh_suzie_q | Feb 26, 2018
In reply to @grandmar "I have found that the doctor will advocate for the kind of medicine he/she practices. I..." + (show)
@grandmar

I have found that the doctor will advocate for the kind of medicine he/she practices. I found a great pain doc. When I told him I decided to have surgery, he did not appear to be very happy about it. When I spoke with the neurosurgeon about continuing shots on my lumbar spine, he said he had a few ideas we'd talk about after the cervical surgery.
So, you, as a patient, have to do your own research so that you can make a semi-informed decision before you see the experts. Don't be afraid to ask questions.
We have to be our own advocates.
Good luck to us all!!!
ronnie

Jump to this post

Yes, I do! My skin Is so! dry It flakes! I use pure coco butter. Found a tub at Sam club. Put it on when I get out of the shower and my skin soaks it right in. It isn't greasy! Hope this helps you!

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oh_suzie_q | @oh_suzie_q | Feb 26, 2018

I am so sorry you are suffering with this. I too have it! I have turned to some alternative medicine. None of the pain rubs helped! I found a natural one that is a dream and takes the pain and inflammation away!!! PM me and I can share the info and website. This company makes products for people like us! All natural though and they work!

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