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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.

irene5 Irene Estes | @irene5 | Feb 27, 2017
In reply to @michiganstressedlady "@irene5 I don't take anything vitamin wise , as I seem to get sick to stomach..." + (show)
@michiganstressedlady

@irene5 I don't take anything vitamin wise , as I seem to get sick to stomach every time I do .... So sorry to hear about your hands , that sucks ! Must be so hard on you , and I do understand, on top of fibro I take care of my BF of 12 yrs , who is 520 lbs and has FTD, He has a bed in the living room and is very aggressive , likes to put me down and such , its difficult caring about someone when they are like this ,,,as you can imagine ,,, Have a good day luv and hang in there. I am with you in spirit . My name is Deb btw , ..very nice to meet you here .

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I will keep you in my prayers.

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basslakeview | @basslakeview | Feb 27, 2017
In reply to @basslakeview "I was diagnosed in 1991 after suffering from a flu virus. Its like I recovered from..." + (show)
@basslakeview

I was diagnosed in 1991 after suffering from a flu virus. Its like I recovered from the fever and was left with the pain I had from the flu. (I suppose thats why i think it was brought on by the flu.)

I also take pain medication, but because I only have one kidney (lost one in 1999 because of a benign oncocytoma tumor) , my nephrologist said not to take any anti inflammatory drugs. Ibuprofen was the only thing that helped my pain so I was told by a general practitioner (before my kidney tumor) I could take up to 6 a day so that's what I took for too many 'years.' One of my surgeons that removed the kidney said that could have been the cause of the tumor, so, after that long explanation, my advise to you...just be careful about your kidneys and liver. I was told some meds filter through one or the other.

After that scare and the recom. to watch what drugs i took, i have ended up taking Methadone (an opiod drug). It works better for me than the one i was on before (Vicoden). I don't get the highs I used to get from the Vicoden and it lasts longer.

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Wanda, after all these years of FM suffering, and all the different kinds of pain, I have never experienced that feeling you described of "burning from the inside."
Thats a new description I've never heard or read about. I have pain some days it seems everwhere, and now I have arthritis which just adds to it. I didnt think it was possible to have more chronic pain then I already had with the FM. Ugh!!

Everyone else. ...
I did find a doctor in Houston (in my earlier years with this FM pain) that actually had been researching and trying different things with patients trying to find a cure. She had me giving myself injections of glutathione. It really helped a lot and I thought I was cured so I stopped doing it because it is a little pricey and the trips to Houston from where i live is a 5 hour drive, but back then i was much younger and i was willing to do/try anything. After a few years of much reduced pain; pain i could live with, it all came back (wuth a vengeance) when my only child died in 2013. I had to retire in 2014. The grief and the pain was too much.

The doctor's name (and I had found some of her studies online if you're interested in checking her out, is Patricia Salvato, M.D., Internal Medicine. I still have her address, phone # if anyone is interested. This was a long time ago. She may be retired by now. I haven't researched her in a long time.

Good luck, everyone. Bless you.

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Jen, Alumna Mentor | @sandytoes14 | Feb 27, 2017
In reply to @michiganstressedlady "Does anyone else have swelling with just their hands , especially in the mornings , My..." + (show)
@michiganstressedlady

Does anyone else have swelling with just their hands , especially in the mornings , My fingers feel like sausages and my hands don't want to work....also when I lay down I get horrid heat, burning up heat, and I thought it was menopause but sense it only happens when I lay down now I am wondering if my Fibro is doing this and its just a new symptom.

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@michiganstressedlady I have horrible swelling,pain and stiffness in my hands. Doctor said mine was arthritis. I don't have any 'heat' except hot flashes from menopause. I'm currently in a fibro flare with extreme fatigue and stiffness. I'm using my Spoons wisely.

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robbinr | @robbinr | Feb 27, 2017
In reply to @michiganstressedlady "Does anyone else have swelling with just their hands , especially in the mornings , My..." + (show)
@michiganstressedlady

Does anyone else have swelling with just their hands , especially in the mornings , My fingers feel like sausages and my hands don't want to work....also when I lay down I get horrid heat, burning up heat, and I thought it was menopause but sense it only happens when I lay down now I am wondering if my Fibro is doing this and its just a new symptom.

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<br><br><br><br><br><br><br><br>I have been having a long-lasting flare also with unusual joint swelling then long periods of expelling fluids.<br>I think that the worry about our political state bleeds over into our health response if you are a worrier like me.<br>Feel better! Robbin<br> <br><br><br>

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michiganstressedlady | @michiganstressedlady | Feb 27, 2017

Thank you all and thank you @jamesthee for the prayers , hugs

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Jen, Alumna Mentor | @sandytoes14 | Feb 27, 2017
In reply to @michiganstressedlady "Does anyone else have swelling with just their hands , especially in the mornings , My..." + (show)
@michiganstressedlady

Does anyone else have swelling with just their hands , especially in the mornings , My fingers feel like sausages and my hands don't want to work....also when I lay down I get horrid heat, burning up heat, and I thought it was menopause but sense it only happens when I lay down now I am wondering if my Fibro is doing this and its just a new symptom.

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@robbinr I am a worrier. Always have been. I also am in the midst of getting ready to relocate from Virginia to Florida. My husband and the movers are doing all the packing and heavy stuff. Today I sorted through my closet to see what I wanted to toss/keep. Now I'm off to put my feet up and watch some mindless TV. I hope you feel better too!

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Kelly, Alumna Mentor | @kdubois | Feb 28, 2017
In reply to @andilynn "Wanda, I'm so sorry you have to struggle with this awful illness. Check out the 4-7-8..." + (show)
@andilynn

Wanda, I'm so sorry you have to struggle with this awful illness. Check out the 4-7-8 breathing technique online. I especially like the YouTube videos where Dr. Andrew Weil demonstrates this simple relaxing technique. I find that it gives me a better sense of well being if I do it twice daily as recommended. Good luck. I am a chronic pain sufferer too.

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@michiganstressedlady, I have been treating my fibro with acupuncture. I just started in early January, it's definitely working for me. Walking also helps, along with muscle massage (I cannot take pain medications because, genetically, I don't properly-metabolize them.)

This now leads me to the following... I'm interested in your comments regarding "I am allergic or have bad reactions to most medications" and "making people not react well with meds." After years of not reacting well to medications, last year, I asked Mayo to evaluate me for drug hypersensitivity. (For years, my home doctors had been trying to treat my fibro with tons of meds and kept increasing dosages and adding meds to my regimen in efforts to treat my pain -- and none of them worked -- I also had swollen hands and ample GI pain.) Mayo ran Pharmacogenomics testing on me, and they found that I don't properly-metabolize many medications, and I was born this way. Basically, all of the meds that my home doctors had been treating me with, in addition to my BP medication and GERD medication, were making me incredibly ill. I ceased the vast majority of these meds, and Mayo found alternatives for the other meds, and in the past year I've lost ~50 pounds, the significant majority of my symptoms have completely disappeared, and my pain is less. Without a doubt, these tests saved my life, and I now know that my daughters will never have to go through what I went through for 12 years.

Here's some info regarding the testing I had:
• Drug-Gene testing: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp
• Pharmacogenomics Program: http://mayoresearch.mayo.edu/center-for-individualized-medicine/pharmacogenomics.asp

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irene5 Irene Estes | @irene5 | Feb 28, 2017
In reply to @andilynn "Wanda, I'm so sorry you have to struggle with this awful illness. Check out the 4-7-8..." + (show)
@andilynn

Wanda, I'm so sorry you have to struggle with this awful illness. Check out the 4-7-8 breathing technique online. I especially like the YouTube videos where Dr. Andrew Weil demonstrates this simple relaxing technique. I find that it gives me a better sense of well being if I do it twice daily as recommended. Good luck. I am a chronic pain sufferer too.

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Awesome news!

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robbinr | @robbinr | Feb 28, 2017
In reply to @andilynn "Wanda, I'm so sorry you have to struggle with this awful illness. Check out the 4-7-8..." + (show)
@andilynn

Wanda, I'm so sorry you have to struggle with this awful illness. Check out the 4-7-8 breathing technique online. I especially like the YouTube videos where Dr. Andrew Weil demonstrates this simple relaxing technique. I find that it gives me a better sense of well being if I do it twice daily as recommended. Good luck. I am a chronic pain sufferer too.

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How do you get an appointment? I've had problems with most of the medications prescribed to me, and I would like to know if it is a metabolic issue on my part. Regards, robbinr

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Kelly, Alumna Mentor | @kdubois | Feb 28, 2017
In reply to @andilynn "Wanda, I'm so sorry you have to struggle with this awful illness. Check out the 4-7-8..." + (show)
@andilynn

Wanda, I'm so sorry you have to struggle with this awful illness. Check out the 4-7-8 breathing technique online. I especially like the YouTube videos where Dr. Andrew Weil demonstrates this simple relaxing technique. I find that it gives me a better sense of well being if I do it twice daily as recommended. Good luck. I am a chronic pain sufferer too.

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@robbinr You can submit via this web site form (http://mayoresearch.mayo.edu/center-for-individualized-medicine/contact-form.asp) or call them at the phone number listed on the page.

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