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

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

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@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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@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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@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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@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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@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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@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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KDubois,
That is such positive, encouraging words for me. I am definitely going to read the links you posted.

I am in NE Texas (Longview) and the closest larger cities are Shreveport, La., Tyler, Tx and the Dallas-Ft Worth areas. They all have large teaching hospitals/universities, but I’ve a lot less energy than I used to have when it comes to driving to see a doctor, although Shreveport and Tyler are only an hour away.
Thanks again gor the information.
God bless.

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@tonyc55

Try marijuana with lots of cbd

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I’m confused, there were two people that posted that they could get dismissed from their pain management doctor if they use marijuana, CBD or THC? One person was in New York, and I think the other person was in California. I also am in California but my pain management doctor is the one who told me to use marijuana and so did my internal medicine doctor. My pain management doctor sent me to the doctor where I could get a license.

I use both THC/CBD 50/50 at night because it makes you sleepy, and I use CBD during the day because it helps the pain but does not make you tired. I believe all the CBD products have a small percentage of THC in them, about 10%. I realize in California, marijuana is legal for medical and for recreational, so how can they dismiss you? Are you sure that that’s not just your personal physician’s request? I was just at my pain doctor’s office this morning. As you all probably have to do, every year we have to sign paperwork but all the laws. Today’s paperwork I signed, was much stricter than it’s ever been before because of what’s going on federally, but nowhere did it say I would be dismissed if I use marijuana. As I said, he’s the one who sent me to get on marijuana.

CBD is an ingredient of the whole marijuana plant, that is purified down and used for pain. It is a lot more expensive than the THC, the THC is the portion of the plant makes you high. You can get them mixed separate, and they come in many forms. I use a flavored oil that you goes under your tongue. I also use patches that have either CBD or THC, or mixed. These are like any other pain patch but they have marijuana oil in it. I also get both types in the drops that I use when I hurt and at night, and I use a pain patch that is CBD that works all the time. And yes, for me marijuana in these forms helps a lot.

I also have fibromyalgia plus many previously broken bones, surgeries to put them back together, and the resulting issues from all of that.

The biggest drawback with any marijuana, is it is VERY expensive, especially CBD.

PS, I have tried to register and I may not have done it right.
My name is Jen

Liked by Barbe55, LynneB

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@tonyc55

Try marijuana with lots of cbd

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HI, I have found that the CBD ointments on pain points is very effective, and it doesn’t make me feel anything other than a relief of pain. My job is too mentally intensive to do in a drowsy state. I am always afraid of what the potency will be with tinctures.
I would use it as an all-over body lotion if the cost wasn’t prohibitive. Maybe I’ll come up with a lotion form and market it! Yeah!
Robbinr

Liked by Parus

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@tonyc55

Try marijuana with lots of cbd

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You’re right I forgot all about the ointment. I have a jar of it and I rub it on the pain points. It works wonderfully and mine is only CBD like you said. I have found that any of the forms of CBD, drops, patches and rubs do not make you sleepy or tired at all. If you stay with the CBD and stay away from the THC, you shouldn’t have any problem being tired. I agree I hate that feeling.

Liked by Parus

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@2122

I tried a diet plan that a doctor wrote and for me it worked. It had something to do with not eating anything from the night shade families such as anything with tomatoes, potatoes, etc. You do have to follow it exactly but it is worth it plus you can lose some unwanted inches as well.

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Hi Angie, I’ve gone through a lot of the same issues you’re talking about. Unfortunately with the weight gain, the only way I found to treat the weight gain was to just stop taking the medication. Effexor, Cymbalta, gabapentin and I’m sure others can cause weight gain. They used Effexor for pain maybe 15 years ago and with me I put on 30 pounds in less than six months. Now I’m on Cymbalta and I’ve put on 15 lbs in a month. As soon as I stopped the Effexor, the pounds just melted away. I’m hoping the same happens when I stop Cymbalta. Unfortunately that means you lose your pain med. The problem is once you start putting the weight on, with any of these medications, there’s nothing I’ve found to stop weight gain except stopping the medication. In my experience it just keeps going up and up, so I had to stop. I look back at pictures of me and I was much heavier than I am naturally.

I also haven’t found a doctor that’s very sympathetic. The Dr. that was prescribing the Effexor for my pain actually called me a heifer cow from (the town I lived in, which was farm country). “He” thought he was joking with me. Not funny when you’re talking to a woman who’s rapidly putting on weight.

I hope you find a good solution that it doesn’t involve discontinuing the medication. If you find it please post it.
Thank you, Jen

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I have fibromyalgia and it’s been getting worse and worse. I take or have tried many medications, and I have many of the side effects mentioned. One of the things I haven’t seen mentioned is being absolutely exhausted, making it hard many days to even get up and dressed to go somewhere. Then, once I’m there I want to go home. I either hurt or I’m super tired. I hear people mention many vitamins and I wonder if a particular one helps exhaustion?

The other thing I haven’t seen mentioned is Fibro fog, as my Dr. call it. I call it extreme forgetfulness. Does anyone have something they’ve tried that helps this? I was not forgetful at all before the fibromyalgia kicked in. Now I can’t get the word I want to say or remember things I said or did or we can go. Any help would be greatly appreciated.

Lastly, I have considered coming from California to the closest Mayo. What I’d like is a complete evaluation, pain, rheumatology, neurology, anything. Do they have a fibromyalgia clinic where there are multiple modalities that work together to see if they can get you on the right track? I keep praying to find a medical center that does this type of evaluation.
Thank you, Jen

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Hi Jen,
I was diagnosed in 1995, and the meds that really helped me were (and are) the sleep medications. If you are not getting quality sleep, you cannot get any better. One other medication that REALLY helped was Human Growth Hormone (HGH) which I had prescribed through a Fibro and Fatigue Clinic in Denver. But the Doctor that would sign off on that left, and no other doctor there would approve it. When I used HGH I didn’t have Any Fibro symptoms for the two years that I was injecting it daily and for about 2 years afterwards. I found a clinic in Florida that would prescribe it, but it is ungodly expensive, and insurance won’t cover it. What amazes me is that there is solid literature out there of controlled studies showing HGH is effective, and most doctors act like you are asking to have chicken bones waved over you (which, if I thought chicken bones or Voodoo would work, I would try it).
You might try for a sleep study – sometimes they find that folks have apnea that interrupts their sleep cycle. I use Ambien, and now Seraquil, because I’ve used the Ambien for so long it started losing efficacy.
Acupuncture really helps also. That and Yoga.
Hope you find something that helps you! Just keep trying – that is the ticket. I would wager that if you improve your sleep the brain fog will diminish.
We are all on a journey that most of our loved ones do not understand, but this forum has helped me, and I hope it makes you feel more hopeful and less alone with this strange condition.
Many Regards,
Robbinr

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@jenapower I haven’t found any vitamin’s that work for fibro, although for me getting rest helps a little , or should I say sleeping all at one time instead of 3 on 3 off then 3 on again, ugh ,,,, I did hear mocha tea helps for inflammation and for fatigue , I just bought some and will let you know how it works .. As far as fibro fog, the only time I get that is when ppl tell me things when I am in severe pain , then I do not remember, which I guess is understandable , I don’t want to worry you but it wouldn’t hurt to have a CT scan just to see if anything is going on with your brain as depending on your age , but fibro can cause severe forgetfulness so that’s a toss up and I don’t know of anything that works except I just read an article about vit E helping with memory ,
Mayo is the best place for you to go ,I myself want to go there .. and the only way I know of to get all those dr.s in one place at one time,,,,where one is closest to you , I am not sure but if you type in mayo clinics on computer I am sure it will tell you where the closest one is , Big gentle hugs to you and blessings I hope you figure all of this out and would be interested if you do find something that helps so keep in touch with all of us as I am sure we are all looking for something , anything to help .

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@michiganstressedlady

@jenapower I haven’t found any vitamin’s that work for fibro, although for me getting rest helps a little , or should I say sleeping all at one time instead of 3 on 3 off then 3 on again, ugh ,,,, I did hear mocha tea helps for inflammation and for fatigue , I just bought some and will let you know how it works .. As far as fibro fog, the only time I get that is when ppl tell me things when I am in severe pain , then I do not remember, which I guess is understandable , I don’t want to worry you but it wouldn’t hurt to have a CT scan just to see if anything is going on with your brain as depending on your age , but fibro can cause severe forgetfulness so that’s a toss up and I don’t know of anything that works except I just read an article about vit E helping with memory ,
Mayo is the best place for you to go ,I myself want to go there .. and the only way I know of to get all those dr.s in one place at one time,,,,where one is closest to you , I am not sure but if you type in mayo clinics on computer I am sure it will tell you where the closest one is , Big gentle hugs to you and blessings I hope you figure all of this out and would be interested if you do find something that helps so keep in touch with all of us as I am sure we are all looking for something , anything to help .

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Hello @michiganstressedlady. Thank you for your encouraging post to @jenapower. Mayo Clinic has three main campuses located in Scottsdale, AZ; Jacksonville, FL; and Rochester, MN. Minnesota also includes a network of Health System clinics in various Minnesota and Wisconsin cities. A lot of hospitals across the country are part of the Mayo Clinic Care Network, in which physicians have easier access to Mayo Clinic information and physicians. The best way to know what is closest and available to you would be to use this link, http://mayocl.in/1mtmR63.

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