fibromyalgia pain

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

I read both of your notes on Fibromyalgia/Chronic Fatigue. I was treated for this for 27 years. Then I moved and have a new doctor. She tested me for Lyme Disease and other tick borne diseases.

All these years, as it turned out, I have had Lyme Disease and Rocky Mountain Spotted Fever.

Now, I've found out, the Lyme Disease has morphed into Morgellons Disease. The treatment is the same as for Lyme Disease, antibiotics. You may not have Lyme Disease, but if it turns out you do and you have to take antibiotics, please, AND THIS IS VERY IMPORTANT, make sure you have lab work every month you are on them to test how your liver and kidneys are doing.

Because mine morphed into Morgellons I will probably have to be on antibiotics for 2 or 3 years. Hopefully, you won't have Morgellons.

One more VERY IMPORTANT note. Do not tell your doctor you think you might have MORGELLONS. Just ask him if he will test you for Lymes Disease, otherwise, he/she will look at you and think you're crazy unless you know him personally. But, really, there is no reason to even mention Morgellons. Just ask to be tested for Lymes Disease because you read somewhere that Fibro…and Fatigue have the same symptoms as Lyme Disease.
Good Luck, God Bless,
Elizabeth. 🥀 ❣

REPLY

Fibromyalgia surely can be a challenge. Throw in the other chronic pain seems the fatigue is overwhelming. I have adjusted my diet and due to TMJ my diet is to be soft. No more fresh salads filled with nuts and other crunchy things. Have adapted to this. My energy level has been so low.
I was fairly certain I needed more protein. Started looking at plant based protein powders. Have been using this for a couple of weeks to supplement my diet. They are now available sugar/gluten/GMO/dairy free. This is the only thing I have changed and my energy level has improved.
My experience thus far. Plus I have dropped 3 lbs. in this 2 weeks.
Whether it is more protein…? Don’t know for sure.

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@parus

Fibromyalgia surely can be a challenge. Throw in the other chronic pain seems the fatigue is overwhelming. I have adjusted my diet and due to TMJ my diet is to be soft. No more fresh salads filled with nuts and other crunchy things. Have adapted to this. My energy level has been so low.
I was fairly certain I needed more protein. Started looking at plant based protein powders. Have been using this for a couple of weeks to supplement my diet. They are now available sugar/gluten/GMO/dairy free. This is the only thing I have changed and my energy level has improved.
My experience thus far. Plus I have dropped 3 lbs. in this 2 weeks.
Whether it is more protein…? Don’t know for sure.

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@parus
Good Morning!
When I was in the throws of Fibro and TMJ, that was the start of a never ending battle with pain and fatigue in one form or another.
Anyway, as far as TMJ, a soft diet really isn't necessary except when you are in a flare up. In the meanwhile, warm compresses around your jaws, several times a day can be soothing. Just dampen a hand towel and pop it into the microwave until it reaches a comfortable temp for you. Also, using your fingers, massage the joint area. Regardless of how you are, stay away from food items that require you to open wide to bite, like a large apples. It is necessary to chew to help build up your jaw. For added protein, try any number of protein shakes like Slimfast Advantage (chocolate is yummy). Mix with a brand of milk called Fair LIfe . This milk has extra protein and less sugar. It comes in all kinds of fat percentages.
As far as dealing with fibro, my doc put me on a VERY mild dose of Amitryptaline (spelling?), 10mg, I believe. This got me into a deep, restorative, REM sleep. This is the healing sleep we need each night. I also went for therapeutic massage (NOT dep tissue since it can inflame trigger points), warm water PT and the chiropractor. Lastly, I started to exercise. Yep, with all that pain. I started by just walking. I lived in a hilly development at the time, which was a challenge. I DIDN'T speed walk and less that half-way through, my hubby would have to drag me the rest of the way.
With all this, I was able to get my Fibro under control. It was a process and not easy. However, the trigger points have ALWAYS remained sensitive to touch (only).
Hope this helps!
Ronnie (GRANDMAr)

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@grandmar

@parus
Good Morning!
When I was in the throws of Fibro and TMJ, that was the start of a never ending battle with pain and fatigue in one form or another.
Anyway, as far as TMJ, a soft diet really isn't necessary except when you are in a flare up. In the meanwhile, warm compresses around your jaws, several times a day can be soothing. Just dampen a hand towel and pop it into the microwave until it reaches a comfortable temp for you. Also, using your fingers, massage the joint area. Regardless of how you are, stay away from food items that require you to open wide to bite, like a large apples. It is necessary to chew to help build up your jaw. For added protein, try any number of protein shakes like Slimfast Advantage (chocolate is yummy). Mix with a brand of milk called Fair LIfe . This milk has extra protein and less sugar. It comes in all kinds of fat percentages.
As far as dealing with fibro, my doc put me on a VERY mild dose of Amitryptaline (spelling?), 10mg, I believe. This got me into a deep, restorative, REM sleep. This is the healing sleep we need each night. I also went for therapeutic massage (NOT dep tissue since it can inflame trigger points), warm water PT and the chiropractor. Lastly, I started to exercise. Yep, with all that pain. I started by just walking. I lived in a hilly development at the time, which was a challenge. I DIDN'T speed walk and less that half-way through, my hubby would have to drag me the rest of the way.
With all this, I was able to get my Fibro under control. It was a process and not easy. However, the trigger points have ALWAYS remained sensitive to touch (only).
Hope this helps!
Ronnie (GRANDMAr)

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@grandmar As I have mentioned to you once before I will listen to my doctor who has my x-rays. Thanks for the input.

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@parus

@grandmar As I have mentioned to you once before I will listen to my doctor who has my x-rays. Thanks for the input.

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Of course, you should listen to your doc. I just give my perspective of what has helped. It is my hope when someone has similar issues, it might be a starting point for a discussion with the doc.
Always wishing you the best of luck for a solution!!
Ronnie
(GRANDMAr)

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@grandmar glad to hear from you and update You sure are a warrior hi five, First tine in ,2 years I have found a rheumatologist ,mine left so going to start all over again:'(

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@clownscrytoo Hi clowns, sorry I can't help with the fibro pain as I don't have it. What I was wondering if you have ever been tested for alpha 1-antitrypsin. I was told that is a cause of fibro, lung and liver diseases. I got tested just by having my dna tested and found out I am a carrier so only have one of the nasty genes but I do have COPD but drs say mine was caused by smoking. Best of luck to you.

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Hi All!
I just received the following from AARP regarding meds for Fibro.
It amazes me that it took sooooooooo many years for the medical community to believe this really exists.
Anyway, this is just an FYI….
Here's to a pain-free day…..
Ronnie (GRANDMAr)

This clinical disorder is marked by muscle pain and chronic fatigue. You can have fibromyalgia alone or along with another condition such as rheumatoid arthritis. Though it’s most common in middle-aged women, fibromyalgia may worsen with age.
“People with fibromyalgia hurt all over,” explains Dallas rheumatologist Zashin. “They have tender points, which hurt when touched, on all four quadrants of their body.” They often have insomnia, depression and other issues. “A lot of rheumatologists shy away from fibromyalgia patients because there may not be a quick solution, and they may require more time during their visit,” Zashin adds.
Fight back with an anti-addiction drug
Some physicians prescribe low doses of naltrexone — typically used to help addicts stay off alcohol and drugs — to fibromyalgia patients. In one study, 32 percent of those taking low-dose naltrexone experienced significantly less pain and fatigue or sleep problems, compared with 11 percent who took a placebo. “Naltrexone blocks opioid receptors; the body responds by increasing levels of natural opioids, helping with pain and fatigue,” Zashin says.

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@grandmar

Hi All!
I just received the following from AARP regarding meds for Fibro.
It amazes me that it took sooooooooo many years for the medical community to believe this really exists.
Anyway, this is just an FYI….
Here's to a pain-free day…..
Ronnie (GRANDMAr)

This clinical disorder is marked by muscle pain and chronic fatigue. You can have fibromyalgia alone or along with another condition such as rheumatoid arthritis. Though it’s most common in middle-aged women, fibromyalgia may worsen with age.
“People with fibromyalgia hurt all over,” explains Dallas rheumatologist Zashin. “They have tender points, which hurt when touched, on all four quadrants of their body.” They often have insomnia, depression and other issues. “A lot of rheumatologists shy away from fibromyalgia patients because there may not be a quick solution, and they may require more time during their visit,” Zashin adds.
Fight back with an anti-addiction drug
Some physicians prescribe low doses of naltrexone — typically used to help addicts stay off alcohol and drugs — to fibromyalgia patients. In one study, 32 percent of those taking low-dose naltrexone experienced significantly less pain and fatigue or sleep problems, compared with 11 percent who took a placebo. “Naltrexone blocks opioid receptors; the body responds by increasing levels of natural opioids, helping with pain and fatigue,” Zashin says.

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@grandmar

Interesting information for all who deal with fibro pain. Thanks for sharing that.

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@hopeful33250

@grandmar

Interesting information for all who deal with fibro pain. Thanks for sharing that.

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Sure. YOu are welcome!

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Have any of you with fibromyalgia been tested for alpha one ???

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@grandmar

Hi All!
I just received the following from AARP regarding meds for Fibro.
It amazes me that it took sooooooooo many years for the medical community to believe this really exists.
Anyway, this is just an FYI….
Here's to a pain-free day…..
Ronnie (GRANDMAr)

This clinical disorder is marked by muscle pain and chronic fatigue. You can have fibromyalgia alone or along with another condition such as rheumatoid arthritis. Though it’s most common in middle-aged women, fibromyalgia may worsen with age.
“People with fibromyalgia hurt all over,” explains Dallas rheumatologist Zashin. “They have tender points, which hurt when touched, on all four quadrants of their body.” They often have insomnia, depression and other issues. “A lot of rheumatologists shy away from fibromyalgia patients because there may not be a quick solution, and they may require more time during their visit,” Zashin adds.
Fight back with an anti-addiction drug
Some physicians prescribe low doses of naltrexone — typically used to help addicts stay off alcohol and drugs — to fibromyalgia patients. In one study, 32 percent of those taking low-dose naltrexone experienced significantly less pain and fatigue or sleep problems, compared with 11 percent who took a placebo. “Naltrexone blocks opioid receptors; the body responds by increasing levels of natural opioids, helping with pain and fatigue,” Zashin says.

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@grandmar Wow you mean after all these years they have discovered something Thanks for this information I will talk with my Dr about it.

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Thank you for sharing naltrexone for fibromyalgia pain. I was an addiction counselor for 25 pus year and naltrexone was prescribed for many of our patients with opiod addiction and worked well. I see my doctor next week and I will talk to her about it. I have fibromyalgia and osteoarthritis. Pain is a daily struggle for me. I am taking prescribed percocet on a daily basis and that helps with the osteoarthritis pain, but does little for the fibromyalgia pain.

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@summertime4

Thank you for sharing naltrexone for fibromyalgia pain. I was an addiction counselor for 25 pus year and naltrexone was prescribed for many of our patients with opiod addiction and worked well. I see my doctor next week and I will talk to her about it. I have fibromyalgia and osteoarthritis. Pain is a daily struggle for me. I am taking prescribed percocet on a daily basis and that helps with the osteoarthritis pain, but does little for the fibromyalgia pain.

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I take Gabapentin (Neurontin) & Savella for my fibromyalgia pain. They’re prescribed by my pain management doctor and works well.

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@lioness

@grandmar Wow you mean after all these years they have discovered something Thanks for this information I will talk with my Dr about it.

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Hope it helps.

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