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

@tonyc55

Try marijuana with lots of cbd

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@jenapower Hi fellow Jen! My thoughts about the person who lives in California and can
be dismissed if THC/CBD is found in their system, is that the pain management doctor is 1) not licensed to prescribe marijuana 2) does not believe in its use. I presently live in Virginia and medical marijuana is not legal.
Jen, you mentioned that you tried to register and may not have done it right. Can you give me more information? Where are you registering?

Liked by Parus, LynneB

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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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Wow Justin, thank you ever so much. I’ve been looking for this for so long and so is my husband. It’s hard to just sit here and suffer and watch my well-meaning doctors not know what to do. I will definitely look into what you’ve given me and I thank you from the bottom my heart. Jen

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@tonyc55

Try marijuana with lots of cbd

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Sandy I did figure out where to register at the right place I just didn’t know when I wrote that post. Thank you. I think what I was talking about with the marijuana was I didn’t realize it was so different with than one state. Every doctor I’ve been to and there’s been a lot, Especially my pain management doctor, who guided me through the whole marijuana system, have recommended that I use it and guided me to the people that could me. So I was extremely surprised to hear that anyone at least in our state, would be kicked out of their pain management doctors practice. My pain management doctor, my rheumatologist, my internal medicine doctor, have all told me to take marijuana. No one has ever mentioned being removed from at practice for using. Just honestly the first time I’ve ever heard of it. I don’t think it’s just my one doctor believing in it, I do think you’re right in that some doctors who don’t believe in it would use it as a reason to remove people from their practice. In a state where it’s completely legal, it works, that just seems cruel especially when they want to take away the narcotics too, what are they want chronic pain parents to do? Thank you for your response I appreciate it a lot.

One of the things that I didn’t explain, is that none of the regular pain management doctors or internal medicine or rheumatologist prescribe marijuana. They tell you the name of the physician that that is their whole practice is giving out marijuana licenses. You have to come in with your x-rays, CT or MRI’s, the medications are wrong, and then they will decide whether you’re a candidate for a medical marijuana license. The license is good for one year and then it has to be renewed. After that you have to go to a dispensary. Believe it or not we have dispensaries that are made just for the older/elderly. They have brochures you look at what you want, you call and talk to the owner about what product would be best for you, thenthey send I lovely young lady to your house goes over everything with you you pay them and they live. You never have to go into a dispensary. There are other dispensaries that are made for all ages that will do it just in the mail as long as you get your license to them. They have to have a copy of it on file and then they will very discreetly get you the medications, the doses, the forms of medication that you prefer. I do it through it’s either UPS or FedEx I’m not sure my company uses. I honestly have never even met anybody. Which makes it for an older person that isn’t comfortable, like my children would’ve been, going into a dispensary comfortable. The funny part is state is when my kids were in high school I chase them around trying to get them to never use marijuana, now they are in their 30s don’t use it, and their mom does. But I’m pretty sick and they know that. So the world kind of turns its end. I feel bad for the people in other states can’t get it because it really doesn’t make a difference. I hope someday those people that are not against it or able to get it if they’re sick.
Jen

Liked by Parus, LynneB

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That is a remarkable endorsement. I have tried L-glutamine with no real improvement to my over-all well-being. Also D-Ribose, although it does seems to help with fatigue after workouts (not that I can workout anymore).
I am happy for you that you found such a magic bullet for a mysterious ailment. I would like to hear if anyone else has had such a results.
Many Regards,
Robbinr

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@robbinr

That is a remarkable endorsement. I have tried L-glutamine with no real improvement to my over-all well-being. Also D-Ribose, although it does seems to help with fatigue after workouts (not that I can workout anymore).
I am happy for you that you found such a magic bullet for a mysterious ailment. I would like to hear if anyone else has had such a results.
Many Regards,
Robbinr

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It wasn't L-glutamine.  It was glutathione.  I don't know if those two things are the same or not.  They may not be anything alike, but after stopping it for a year or so, the FM came back, and during stressful times, with a vengeance.

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They are both amino acids but they are definitely different components. I’ll try anything, so thanks for the tip!
Regards, Robbinr

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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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Thank you very much for the mocha tea suggestion I’ll try that.

As for the fibro fog I’ve had every single doctor mind tell me that’s what the problem is. I’ve asked them over and over is something else worse wrong… no…they seriously have done CAT scans on my brain, CT scans on my brain and x-rays of everything. There are no house hidden tumors nothing. I almost kinda wish there was something they could fix, but no. So I thought there might be some type of herb or vitamin that my spur things on. I will read what’s below and try those things to thank you all for your help I appreciate it a lot. This is a very comforting place and although I’m’ said you all have struggles like I do, I’m glad I have you to share them with and talk to them. Jen

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@tonyc55

Try marijuana with lots of cbd

Jump to this post

@jenapower Thank you for the info on how California does medical marijuana. I have wondered how it was handled. My doctor doesn’t prescribe adequate pain meds for me. I get a small amount of Vicodin a month that I take for degenerative disc disease, bulging disc and the associated problems. I also have Fibro and arthritis. I have thought about trying marijuana for the pain.
Jen

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@jenapower

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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@jenapower You are not alone in having fatigue or Fibro fog. Sometimes the fatigue is the worst part for me. It seems to come in cycles, at least every 5 weeks I have 3-4 days when getting out of bed, making coffee and brushing my teeth, make me feel as if I’ve run a marathon on no sleep. I am on Cymbalta, Lyrica and Baclofen and Doxepin. I take Centrum Silver, Citrical D3 with magnesium daily as well. The magnesium helps with the pain. Has your doctor done blood work with a vitamin panel? I highly suggest it. You could be anemic or low on your B vitamins.
Try not to stress about the memory loss. The more you do, the worse it is. Also are you getting at least 6-7 hours of sleep per night? Less sleep will exacerbate all of your symptoms.
Praying for you,
Jen

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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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@basslakeview It appears that your post did not appear correctly. Can you tell me if you are using a Word type application or typing directly into the reply box? I’m tagging our moderators on this as well. @JustinMcClanahan @colleenyoung

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So what were you taking that did work. I’m considering stopping all pain meds, and move forward with other meds that are not as harsh and addictive but no Lyrica or Cymbalta which I have reactions to. Jen

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@jenapower

So what were you taking that did work. I’m considering stopping all pain meds, and move forward with other meds that are not as harsh and addictive but no Lyrica or Cymbalta which I have reactions to. Jen

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@jenapower I have not found the “magic potion” so to speak. Fibromyalgia is so complex and while I’m not a medical professional, I believe it is a combination of medicine, vitamins, exercise and adequate sleep work best in treating Fibro.

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@irene5

Hi. I am so sorry you are suffering so much. I think that hydrocodone may be a good choice for some types of pain, but fibromyalgia responds very well to Elavil and Gabapentin. I took Elavil for years, and it also helped with my migraines, and gave me a much better night sleep. Good luck to you. Irene

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I haven’t taken elevil for years due to side effects. My neurologist has me on Topiramate /am and Gabapentin /pm, which helps sleep. Also, Fetzima & Welbutrin 300 for emotional. (No marijuana allowed here.)

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@irene5

Hi. I am so sorry you are suffering so much. I think that hydrocodone may be a good choice for some types of pain, but fibromyalgia responds very well to Elavil and Gabapentin. I took Elavil for years, and it also helped with my migraines, and gave me a much better night sleep. Good luck to you. Irene

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My only intention was to warn of any anti-inflammatories taken for the relief of pain because it may have been a contributing factor to a tumor developing in my kidney, which I lost.  Ibuprofen was the only pain med that worked for me in regard to pain.  I did have to change to other non-anti-inflammatories such as prescription drugs I didn’t like, because they would make me ‘high’ and made it very difficult to do my job.  This is when I finally found one that helped with pain while not making me high…Methadone.Elizabeth

Liked by Parus

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@jenapower

So what were you taking that did work. I’m considering stopping all pain meds, and move forward with other meds that are not as harsh and addictive but no Lyrica or Cymbalta which I have reactions to. Jen

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@jenapower What kinds of reactions do you have to Lyrica and Cymbalta?

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