Anyone have overlapping nerve pain illnesses with fibromyalgia?

Posted by jeannesf1 @jeannesf1, 5 days ago

Are there overlapping nerve pain illnesses that seem to show up with fibromyalgia?

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Yes. I have neuropathy pain (hot & stinging) in my feet now moving up into ankles and lower legs. Fibromyalgia, insomnia, restless leg syndrome and migraines since about the 7th grade.
At about age 12 I fell off in front (bareback) of a galloping a horse and was trampled underneath. Spent time in the hospital with internal injuries and double concussions. I am now almost 76 and have been suffering with migraines & neuropathy issues since Jr. high school in the 60s, probably from the riding accident.
For over 35 years "it was all in my head" as the docs could not find anything physically wrong with me. I learned to shut up about it knowing nothing would be done to help me. Only about 1995 did a Kaiser Permanente doctor in California tell me about a newly discovered pain issue named "fibromyalgia". I wanted to kiss him!!! I was sane after all!
He didn't prescribe any opioids for the fibro but he did prescribe a drug (Caffergot, no longer on the market) for the migraines which worked within 15 minutes of onset. That alone was a miracle in my opinion. However, the fibro and neuropathy weren't treated yet except with lots of aspirin at first, then acetaminophen and ibuprofen when they came on the market sometime in the mid-70s.
Several years later my (female) doctor (they tend to understand us women a little better maybe??) prescribed low-dose hydrocodone/acetaminophen 5/325mg twice a day for the neuropathy. For about 4 yearsthat gave me several hours of reduced pain relief each day. Being a tiny bit "high" didn't hurt either. It was easier to ignore the migraines (opioids don't cure or help migraines-they might actually make them worse and "Cafergot" had been removed from the market in the U.S. so I could no longer use that). About 10 years ago I had a radiographic ablation treatment on the left side of my neck which literally cured the migraines immediately (they were always only on the left side). They are gradually returning now so I will have it done again soon.
Before retiring a little early, I always had full-time desk and computer jobs which helped distract me from the pain. My female doctor moved her practice too far away for me so now my most recent (male) doctor won't prescribe any opioids because he's concerned I might get addicted, AND I think he's afraid of losing his license to practice in this crazy political maelstrom regarding opioids.
I worked in the VA medical rehab field for over 9 years. I was in charge of ALL employee (doctors included) training among other things. Once I was required to arrange training for the medical staff which supported the increased use of opioids by VA doctors because pain was being under-treated in the Veteran population. For several years now the pendulum has swung the other direction. If you go to the ER for some painful reason you might get a 2-day supply - maybe if you're luck. Twice In hospital they gave me morphine which I reacted to poorly. I refuse it now if offered.
Regarding hydrocodone 5/325. It's not possible to get addicted with such a small dose taken twice a day, but then what do I know? Most opioid deaths are from drugs gotten illegally or on the streets, not much from the pharmacy, nor with such a low dose. We can thank the politicians, true drug addicts and some well-intentioned MDs for blowing a reasonable issue way out of proportion for those of us who truly need them.
Now, several years later, my current doctor (whom I do like a lot personally) is finally referring me to a pain specialist since I've also contracted rheumatoid arthritis 14 months ago (with the frequent need of steroids for flare ups), had a deadly stroke (100% blockage basilar artery stroke) which in and of itself should have killed me, multiple TIAs which just showed up on the MRI and CT scans done when I had the stroke last year. Oh, did I mention I also had shingles and a mild case of COVID last year after the stroke? That was fun. I can finally walk a straight line again, albeit carefully.
And my 82 year-old husband has been developing dementia for several years; I get to deal with his odd and often spendy behavior; thank goodness I love him a lot!! Getting old is not for the weak minded although I may sound just a bit "off" in the head myself. 🙂

I thank God that I have a strong belief for a brighter future with Him and the Angels, my parents and 9 siblings. Yes, I am the youngest of 12 with 2 living brothers, both in their 90s. God is good! With Him I can do hard things.

REPLY
Profile picture for crewsr @crewsr

Yes. I have neuropathy pain (hot & stinging) in my feet now moving up into ankles and lower legs. Fibromyalgia, insomnia, restless leg syndrome and migraines since about the 7th grade.
At about age 12 I fell off in front (bareback) of a galloping a horse and was trampled underneath. Spent time in the hospital with internal injuries and double concussions. I am now almost 76 and have been suffering with migraines & neuropathy issues since Jr. high school in the 60s, probably from the riding accident.
For over 35 years "it was all in my head" as the docs could not find anything physically wrong with me. I learned to shut up about it knowing nothing would be done to help me. Only about 1995 did a Kaiser Permanente doctor in California tell me about a newly discovered pain issue named "fibromyalgia". I wanted to kiss him!!! I was sane after all!
He didn't prescribe any opioids for the fibro but he did prescribe a drug (Caffergot, no longer on the market) for the migraines which worked within 15 minutes of onset. That alone was a miracle in my opinion. However, the fibro and neuropathy weren't treated yet except with lots of aspirin at first, then acetaminophen and ibuprofen when they came on the market sometime in the mid-70s.
Several years later my (female) doctor (they tend to understand us women a little better maybe??) prescribed low-dose hydrocodone/acetaminophen 5/325mg twice a day for the neuropathy. For about 4 yearsthat gave me several hours of reduced pain relief each day. Being a tiny bit "high" didn't hurt either. It was easier to ignore the migraines (opioids don't cure or help migraines-they might actually make them worse and "Cafergot" had been removed from the market in the U.S. so I could no longer use that). About 10 years ago I had a radiographic ablation treatment on the left side of my neck which literally cured the migraines immediately (they were always only on the left side). They are gradually returning now so I will have it done again soon.
Before retiring a little early, I always had full-time desk and computer jobs which helped distract me from the pain. My female doctor moved her practice too far away for me so now my most recent (male) doctor won't prescribe any opioids because he's concerned I might get addicted, AND I think he's afraid of losing his license to practice in this crazy political maelstrom regarding opioids.
I worked in the VA medical rehab field for over 9 years. I was in charge of ALL employee (doctors included) training among other things. Once I was required to arrange training for the medical staff which supported the increased use of opioids by VA doctors because pain was being under-treated in the Veteran population. For several years now the pendulum has swung the other direction. If you go to the ER for some painful reason you might get a 2-day supply - maybe if you're luck. Twice In hospital they gave me morphine which I reacted to poorly. I refuse it now if offered.
Regarding hydrocodone 5/325. It's not possible to get addicted with such a small dose taken twice a day, but then what do I know? Most opioid deaths are from drugs gotten illegally or on the streets, not much from the pharmacy, nor with such a low dose. We can thank the politicians, true drug addicts and some well-intentioned MDs for blowing a reasonable issue way out of proportion for those of us who truly need them.
Now, several years later, my current doctor (whom I do like a lot personally) is finally referring me to a pain specialist since I've also contracted rheumatoid arthritis 14 months ago (with the frequent need of steroids for flare ups), had a deadly stroke (100% blockage basilar artery stroke) which in and of itself should have killed me, multiple TIAs which just showed up on the MRI and CT scans done when I had the stroke last year. Oh, did I mention I also had shingles and a mild case of COVID last year after the stroke? That was fun. I can finally walk a straight line again, albeit carefully.
And my 82 year-old husband has been developing dementia for several years; I get to deal with his odd and often spendy behavior; thank goodness I love him a lot!! Getting old is not for the weak minded although I may sound just a bit "off" in the head myself. 🙂

I thank God that I have a strong belief for a brighter future with Him and the Angels, my parents and 9 siblings. Yes, I am the youngest of 12 with 2 living brothers, both in their 90s. God is good! With Him I can do hard things.

Jump to this post

@crewsr you are such a warrior! I agree. I agree. I agree, on all you said, opioids, getting diagnosed, etc. “I Leaned to shut up knowing nothing could be done for me.” It’s very sad that we feel that way. Have had so many issues/pains that couldn’t be helped by doctors that we suffer more by keeping quiet. Very recently started with headache on right side, my ear even hurt horrifically. Couldn’t sleep from the pain the Maxalt for migraines wasn’t helping and was overdosing on ibuprofen. Then pain started going down my neck. I very hesitantly contacted my doctor. Afraid to even try. Well I had an ear infection! If I didn’t have this fear of being scrutinized for having fibromyalgia I might have had relief from this very diagnosable ailment sooner. I truly admire your resilience and your faith. God bless you.

REPLY
Profile picture for jeannesf1 @jeannesf1

@crewsr you are such a warrior! I agree. I agree. I agree, on all you said, opioids, getting diagnosed, etc. “I Leaned to shut up knowing nothing could be done for me.” It’s very sad that we feel that way. Have had so many issues/pains that couldn’t be helped by doctors that we suffer more by keeping quiet. Very recently started with headache on right side, my ear even hurt horrifically. Couldn’t sleep from the pain the Maxalt for migraines wasn’t helping and was overdosing on ibuprofen. Then pain started going down my neck. I very hesitantly contacted my doctor. Afraid to even try. Well I had an ear infection! If I didn’t have this fear of being scrutinized for having fibromyalgia I might have had relief from this very diagnosable ailment sooner. I truly admire your resilience and your faith. God bless you.

Jump to this post

Oh my! Ear infections are not only painful but can lead to worse stuff if
not taken care of. I'm so glad you were finally properly diagnosed!
I haven't had one since I was a kid but I remember that pain well. I did
have a sinus infection once about 15 years ago but it didn't hurt at all. I
couldn't hear very well so my supervisor told me to go to the doctor, he
was tired of repeating everything. Actually, he was really nice about it. I
had a friend that was also an ENT doctor so I went to him and he diagnosed
the sinus infection and put me on over a month's length of antibiotics and
that did the trick. (Now most antibiotics don't work at all for me anymore
except one that makes me deathly ill for a day) I used to suffer
frequent urine infections for most of my adult life which probably
contributed to the antibiotics not working anymore but then all UTIs
stopped abruptly after my stroke for some odd reason. Life is strange. Now
all I have to deal with is a husband who has dementia that is slowly
getting worse.
Do your ears ever hurt even when there's no infection? Cold makes mine
ache. My 5 children had ear infections when young and they were miserable.
One of them (Brian) had frequent ear infections but he finally outgrew them
about age 6.
Tell me more about yourself. I'm really interested in your pain history
too. It is definitely undertreated thanks to all the drug addicts that give
opioids a bad name. Most people don't have the experience I've had working
with doctors and nurses at the VA for so long. Retirement has been really
nice though.

REPLY
Profile picture for crewsr @crewsr

Oh my! Ear infections are not only painful but can lead to worse stuff if
not taken care of. I'm so glad you were finally properly diagnosed!
I haven't had one since I was a kid but I remember that pain well. I did
have a sinus infection once about 15 years ago but it didn't hurt at all. I
couldn't hear very well so my supervisor told me to go to the doctor, he
was tired of repeating everything. Actually, he was really nice about it. I
had a friend that was also an ENT doctor so I went to him and he diagnosed
the sinus infection and put me on over a month's length of antibiotics and
that did the trick. (Now most antibiotics don't work at all for me anymore
except one that makes me deathly ill for a day) I used to suffer
frequent urine infections for most of my adult life which probably
contributed to the antibiotics not working anymore but then all UTIs
stopped abruptly after my stroke for some odd reason. Life is strange. Now
all I have to deal with is a husband who has dementia that is slowly
getting worse.
Do your ears ever hurt even when there's no infection? Cold makes mine
ache. My 5 children had ear infections when young and they were miserable.
One of them (Brian) had frequent ear infections but he finally outgrew them
about age 6.
Tell me more about yourself. I'm really interested in your pain history
too. It is definitely undertreated thanks to all the drug addicts that give
opioids a bad name. Most people don't have the experience I've had working
with doctors and nurses at the VA for so long. Retirement has been really
nice though.

Jump to this post

@crewsr Hi. Im 67 years old now. I had many ear infections as a child. In my late 20’s I started getting chronic odd conditions: horrific eye pain on upper lids/eyeball, went to many specialists, homeopathic doctors, unknown origin; had chronic sinus infections (I took antibiotics for 1 year), had sinus scans etc, reason unknown, TMJ )jaw and facial bone in constant pain, chronic migraines up to 25 days per month; chronic diarrhea since childhood; depression, anxiety, insomnia, chronic pelvic pain, unknown origin, many kidney stones 4 (lithotripsies), gallstones/gall bladder removed, then chronic neck pain, then chronic shoulder pain interstitial cystitis (I’m having that again right now), and then finally hit with pain everywhere, feet, knees, legs, arms. The worse in recent years was hip, thigh and sides of legs (nerve pain, horrible), I’m sure I don’t remember all the conditions I struggled with. Had difficulty walking and had to crawl up stairs (we lived in a town house and bedrooms were upstairs). Was tested for everything, doctors were thinking muscular dystrophy. Nothing. Diagnosed with fibromyalgia by process of elimination. I worked stressful/rewarding job throughout this and raised 2 boys on my own. But eventually had to retire early. Still I was very active and social before I had to retire, until I just couldn’t anymore. Fatigue. My life changed completely. Sorry it’s so long. My pain now jumps around so it’s not all over and it could be worse. Still I know others have it much worse and I pray for all that have this thing in any capacity. At least at this point I have good days and bad days. And am grateful for the good days. Are you in pain all day, everyday?

REPLY
Profile picture for crewsr @crewsr

Yes. I have neuropathy pain (hot & stinging) in my feet now moving up into ankles and lower legs. Fibromyalgia, insomnia, restless leg syndrome and migraines since about the 7th grade.
At about age 12 I fell off in front (bareback) of a galloping a horse and was trampled underneath. Spent time in the hospital with internal injuries and double concussions. I am now almost 76 and have been suffering with migraines & neuropathy issues since Jr. high school in the 60s, probably from the riding accident.
For over 35 years "it was all in my head" as the docs could not find anything physically wrong with me. I learned to shut up about it knowing nothing would be done to help me. Only about 1995 did a Kaiser Permanente doctor in California tell me about a newly discovered pain issue named "fibromyalgia". I wanted to kiss him!!! I was sane after all!
He didn't prescribe any opioids for the fibro but he did prescribe a drug (Caffergot, no longer on the market) for the migraines which worked within 15 minutes of onset. That alone was a miracle in my opinion. However, the fibro and neuropathy weren't treated yet except with lots of aspirin at first, then acetaminophen and ibuprofen when they came on the market sometime in the mid-70s.
Several years later my (female) doctor (they tend to understand us women a little better maybe??) prescribed low-dose hydrocodone/acetaminophen 5/325mg twice a day for the neuropathy. For about 4 yearsthat gave me several hours of reduced pain relief each day. Being a tiny bit "high" didn't hurt either. It was easier to ignore the migraines (opioids don't cure or help migraines-they might actually make them worse and "Cafergot" had been removed from the market in the U.S. so I could no longer use that). About 10 years ago I had a radiographic ablation treatment on the left side of my neck which literally cured the migraines immediately (they were always only on the left side). They are gradually returning now so I will have it done again soon.
Before retiring a little early, I always had full-time desk and computer jobs which helped distract me from the pain. My female doctor moved her practice too far away for me so now my most recent (male) doctor won't prescribe any opioids because he's concerned I might get addicted, AND I think he's afraid of losing his license to practice in this crazy political maelstrom regarding opioids.
I worked in the VA medical rehab field for over 9 years. I was in charge of ALL employee (doctors included) training among other things. Once I was required to arrange training for the medical staff which supported the increased use of opioids by VA doctors because pain was being under-treated in the Veteran population. For several years now the pendulum has swung the other direction. If you go to the ER for some painful reason you might get a 2-day supply - maybe if you're luck. Twice In hospital they gave me morphine which I reacted to poorly. I refuse it now if offered.
Regarding hydrocodone 5/325. It's not possible to get addicted with such a small dose taken twice a day, but then what do I know? Most opioid deaths are from drugs gotten illegally or on the streets, not much from the pharmacy, nor with such a low dose. We can thank the politicians, true drug addicts and some well-intentioned MDs for blowing a reasonable issue way out of proportion for those of us who truly need them.
Now, several years later, my current doctor (whom I do like a lot personally) is finally referring me to a pain specialist since I've also contracted rheumatoid arthritis 14 months ago (with the frequent need of steroids for flare ups), had a deadly stroke (100% blockage basilar artery stroke) which in and of itself should have killed me, multiple TIAs which just showed up on the MRI and CT scans done when I had the stroke last year. Oh, did I mention I also had shingles and a mild case of COVID last year after the stroke? That was fun. I can finally walk a straight line again, albeit carefully.
And my 82 year-old husband has been developing dementia for several years; I get to deal with his odd and often spendy behavior; thank goodness I love him a lot!! Getting old is not for the weak minded although I may sound just a bit "off" in the head myself. 🙂

I thank God that I have a strong belief for a brighter future with Him and the Angels, my parents and 9 siblings. Yes, I am the youngest of 12 with 2 living brothers, both in their 90s. God is good! With Him I can do hard things.

Jump to this post

@crewsr it would be incorrect to say that people can’t get addicted to low-dose opioid they certainly can.

REPLY

Your question doesn’t provide enough background information so the answer has to be general. A lot of people think because they have fibromyalgia. The other pains they get are due to the fibromyalgia and they are not. Unfortunately, things happen as we age and they might not be related. However, they can be in the way they can be related is through nerves becoming excited. Nerve signals when they get excited for one thing like fibromyalgia, they can also get excited when other things happen as well. So one sense of pain is heightened by one thing to another. There are different types of nerve medications that block these kinds of signals and you should see a good kinesiology Doctor Who may be able to provide a different class of muscle relaxers to help block the pain signals. After 30 years, I figured out that my fibromyalgia pain was actually gout pain and eradicated it with allopurinol medication.(didn’t eradicate the gout eradicated the inflammatory pain.) which was always showing up as fibromyalgia or osteoarthritis pain, and all along. It was gout pain.

REPLY

Dear Jeannesf1 and Crewsr
I totally agree with everything both of you have discussed because it seems like you’re talking about my life too! I have everything from fibromyalgia Hashimoto Thyroiditis Hypertensive heart disease TIAs Myasthenia Gravis RLS Migraines Ataxia and Widespread Neuropathy. I’ll stop there. My heart goes out to the both of you because I know what’s it’s like not to be able to get the help we deserve. I also worked in the medical field for over 40 years and saw how opioids were and were NOT handed out to patients. In the beginning there were A LOT of doctors that did abuse giving out these Rxs because they were receiving incentives from the pharmaceutical companies and these doctors fueled the problem along with the addicts( especially the ones the doctors made addicts). I do blame the government for making it so difficult for people who need pain medication to get it. For making the doctors that didn’t fuel the problem so scared to RX them but the Pharmaceutical company down right lied to everyone about the dangers of taking them long term.
You are both amazing warriors of God and I will Pray for you.

REPLY

Yes, definitely. Cold plunges are the best. I do more of a cool plunge, ~70 degrees. It quiets my fibro body immediately and I sit in it for about 5 min. I only take flexeril for fibro…no nerve meds and I had debilitating pain. I also go to a Pilates studio 1:1 every week. That, plus the cold plunge makes the biggest difference for me.

REPLY
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