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 Chronic Pain group.

@earthmands

I know of his books and story. But he just sells his books and supplements. I'm now homeless for fibromyalgia and on SSI/SSDI. So I'm pretty poor. Lol. Darn it. I just want a doctor, a PCP, that cares and can refer me to like pain management, rheumatologist, or mad scientist that can do anything. In the 10 years I have been on SSI/SSDI For fibromyalgia , I haven't had one PCP that is a believer. Never had a referral or any real care. I was never a doctor shopper. If I did that they think your a druggie. I am not. Do I stay and suffer. But not now. Fibromyalgia has ruined my like and now left me homeless. So I am going to doctor shop now and will move anywhere. I had hoped to get in the Mayo clinic there in Rochester Minnesota but there full. They said try Jacksonville Florida mayo. I did this morning and they dont treat it. 2 classes on living with it. That's all. So the Mayo clinic let me down. So I'm looking for a mad scientist now. Lol. Any ideas?

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Homeless? Sorry to hear that. I hope you have a place to stay though, and can find decent shelter that is more or less permanent. My brother-in-law was homeless, went to friends for a few years, finally got into government subsidized housing in Jacksonville. Hope you find something.

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@cindiwass

Homeless? Sorry to hear that. I hope you have a place to stay though, and can find decent shelter that is more or less permanent. My brother-in-law was homeless, went to friends for a few years, finally got into government subsidized housing in Jacksonville. Hope you find something.

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I did. Been busy to update. I'm a member of a fibromyalgia support group on Facebook. 90,000 plus members. It was asked about dating and how hard it is relationships. I said how fibromyalgia folks should just date each other. It went viral. And we may make a fibro warriors dating site. Well, little did I know I'm the first one. Lol.. I'm now with a wonderful woman in the same boat on relationships and we connected on a spiritual way. We had dreamed of each other some how for year's. My voice she knew. Same with me. Our face's, everything
Crazy. I'm so happy. I'm in Louisiana on the coast. If anyone knows of a good fibromyalgia friendly doctor here around Lafayette that would be nice. She is new here also. She owns a nice home here to so we are great here. Happiness comes to those who wait?? Lol.

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@earthmands

I did. Been busy to update. I'm a member of a fibromyalgia support group on Facebook. 90,000 plus members. It was asked about dating and how hard it is relationships. I said how fibromyalgia folks should just date each other. It went viral. And we may make a fibro warriors dating site. Well, little did I know I'm the first one. Lol.. I'm now with a wonderful woman in the same boat on relationships and we connected on a spiritual way. We had dreamed of each other some how for year's. My voice she knew. Same with me. Our face's, everything
Crazy. I'm so happy. I'm in Louisiana on the coast. If anyone knows of a good fibromyalgia friendly doctor here around Lafayette that would be nice. She is new here also. She owns a nice home here to so we are great here. Happiness comes to those who wait?? Lol.

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So happy for you. I am looking for a good (?) surgeon or someone to help me with my knee and hip pain, so am going to try acupuncture before surgery, but I believe I will need surgery in the short run since I'm getting to that cut-off age. A friend came over to help us today because we're packing to move and we (my husband and I) are in such pain, he with a broken hip and fall and he's reluctant to get an operation (don't blame him), but because the friend came over to help, AND I listened to folk music on public radio station here in West Virginia, I composed a very loving and happy song about friends, guitar + singing. First time I've done that in YEARS. 🙂
Glad you found help, say hello to your partner for me. 🙂

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@cindiwass

So happy for you. I am looking for a good (?) surgeon or someone to help me with my knee and hip pain, so am going to try acupuncture before surgery, but I believe I will need surgery in the short run since I'm getting to that cut-off age. A friend came over to help us today because we're packing to move and we (my husband and I) are in such pain, he with a broken hip and fall and he's reluctant to get an operation (don't blame him), but because the friend came over to help, AND I listened to folk music on public radio station here in West Virginia, I composed a very loving and happy song about friends, guitar + singing. First time I've done that in YEARS. 🙂
Glad you found help, say hello to your partner for me. 🙂

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Yes, he had surgery before this, the surgeon did not do a good job imo, then he fell again, and really wrecked his hip and is in terrible pain continually. So we were both reluctant to get surgery, but if I succeed maybe with my surgery, I hope to encourage him. Best to you.

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@earthmands

I did. Been busy to update. I'm a member of a fibromyalgia support group on Facebook. 90,000 plus members. It was asked about dating and how hard it is relationships. I said how fibromyalgia folks should just date each other. It went viral. And we may make a fibro warriors dating site. Well, little did I know I'm the first one. Lol.. I'm now with a wonderful woman in the same boat on relationships and we connected on a spiritual way. We had dreamed of each other some how for year's. My voice she knew. Same with me. Our face's, everything
Crazy. I'm so happy. I'm in Louisiana on the coast. If anyone knows of a good fibromyalgia friendly doctor here around Lafayette that would be nice. She is new here also. She owns a nice home here to so we are great here. Happiness comes to those who wait?? Lol.

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Plus I will check out facebook pages, I never really do that except for a few local ones. OK, again, best to you.

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@tonyc55

Try marijuana with lots of cbd

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I have gummies with THC , but they cause tachycardia. Anyone else ??

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@llc927

I also have fibro. Walking or standing is very difficult. I don't know if it will help for you but I can suggest SOME relief I have found. At first I didn't think it was that helpful but after trying it again, it helps me long enough to get to the grocery store and back home before I have to go back to bed. One thing is called SOOTHANOL X2. I bought it from Amazon. The reviews on Amazon (if you can believe everything you read) were extremely good. It's pricey but I get a little bit of relief. Be sure to use latex gloves when applying to avoid eye contact. I think it works better if you deep massage it into the skin. Another thing that gives me minimal relief (but I'm happy with ANY relief) in ICY HOT and STOP PAIN – both of which can be purchased at Walgreens over the counter. My rheumatologist suggested I use an under the desk elliptical machine for exercise since I can't stand or walk very far. It has helped a little. I bought the CUBII Pro (again from Amazon.com). Good luck. I hope this helps a little. Stay Strong!

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Hi I just found your message today. I've been wondering about the Cubii machine. I see that you bought one a few years ago. Did you like it and do you think it helps? Thanks

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I have been fighting chronic pain for almost40 years. I over used NASIDs and another well known pain meds. I now have destroyed my heart and pacemaker dependent. Please be careful!

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@judysavage

I have been fighting chronic pain for almost40 years. I over used NASIDs and another well known pain meds. I now have destroyed my heart and pacemaker dependent. Please be careful!

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They keep testing heart function since I am on Etodolac, and have been for years. So far no indication that there's any problem. I probably should take it PRN (as needed) to cut back. I depend a lot on my PT stretches, edema massage (toes/fingers toward torso), pain creams and ice/heat to deal with it.

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PT has only made my pain worse in the past. With all of my spine issues and Fibromyalgia it is very difficult. People are always praying for me to be healed. It has progressed so far that the Pain Management doctor gives me 50mg Fentanyl patches and a muscle relaxer. I would not wish this pain on my worse enemy.

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@judysavage

PT has only made my pain worse in the past. With all of my spine issues and Fibromyalgia it is very difficult. People are always praying for me to be healed. It has progressed so far that the Pain Management doctor gives me 50mg Fentanyl patches and a muscle relaxer. I would not wish this pain on my worse enemy.

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Hello @judysavage. I'm sorry you are in chronic pain. Have you ever considered Mayo Clinic's Pain Rehabilitation Center? Here is a link:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
A helpful tool may be to watch Mayo Clinic's Dr. Sletten present on Central Sensitization Syndrome (CSS). He explains chronic pain syndromes such as Fibromyalgia.
https://technolag.com/dr-sletten-discussing-central-sensitization-syndrome-css/
How are you presently managing your chronic symptoms?

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