Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 12-18-2020, 03:55 PM #1
Maxxine Maxxine is offline
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Default Don't know what else to do

Hello,

I have had chronic pain for almost 4 years. I have had multiple blood tests, x-rays and a couple MRI's. I have seen a neurologist. He told me it's most likely fibromyalgia. But he didn't diagnose me, just referred me to a hospital with an average wait time of 2 years.

I only experience nerve pain on my whole right side. Any injury will cause me severe pain for 2 day to 2 weeks. Depending on the injury. My pain is still getting worse. It hasn't slowed down. I'm on gabapentin, cymbalta, T3s as needed, birth control (as my cycle made it so I only had maybe 3 good days a month) and amitriptyline. I also suffer from migraines. I get really bad "attacks", I start overheating and sweating excessively, along with flu like symptoms and the feeling of tiny pinprick electrical zaps over my entire body. It will eventually subside but I have to lay in the shower for at least 30mins to level out my temp. Certain chairs, hot environments, exercise and certain types of clothing will cause these attacks. I also occasionally get a red rash right under eyes that burns like a chemical burn and feels hot to the touch.


At this point I have no idea what is happening in my body. I don't know what else I can do to find out what is wrong. All my tests come back 100% normal. I feel insane and everytime I get told I'm 100% normal its very upsetting and I loose encouragement to keep trying to find out whats wrong.


Any tips or ideas I'm welcome to. At this point I'm willing to try anything at least once.

Thank you.
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Old 12-18-2020, 06:15 PM #2
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If pain is mainly on right side, or worse after an injury...I wouldn't think it is fibro related.. you could have fibro plus something else..

I would seek out a highly skilled MD or DO might be better as they tend to look at whole body more than MDs, or possibly expert naturopath, or possibly expert chiropractor..

We have a Fibromyalgia forum with useful sticky threads or here is a current websearch with info on fibro.
Fibromyalgia - Google Search

From what I read on fibro years ago, what you mention about doesn't really fit..
I have a similar thing-
chronic myofascial pain - Google Search

[Any injury will cause me severe pain for 2 day to 2 weeks]
You might explore our RSD/CRPS forum also if you haven't yet..
https://www.neurotalk.org/reflex-sym...rsd-and-crps-/

I may have missed past posts that have more information on your symptoms & health history...
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Last edited by Jomar; 12-18-2020 at 07:21 PM. Reason: link fixed
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Old 12-18-2020, 07:20 PM #3
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OP: You say "right side of body", I'm worse on right side but it's from hip replacement 10 yrs ago, it's left my body so damaged.....did you have an surgeries.....I see you take quite a few prescrption meds, I refuse to go there except for 1 ibuprofen and 1 extra strength tylenol every 6 hrs...and with food in stomach and also take colostrum for stomach protection...You could be getting side effects from the meds. I talk to people from Canada and UK and I know they don't take supplements per say, but many many do on their own....

I was told I have Fibro back in 1999, but never truly understood all the fibro stuff, as I believe it's many things gone wrong in our bodies, and for one thyroid issues,,,either not getting any thyroid support, the wrong kind or wrong dosage.....HypoT can cause pain issues... My biggest issue is arthritis and damage from surgery which causes more arthritis.....

Hope you can find some resolve......I just commented on MSM and how it does calm pain....
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Old 12-18-2020, 09:33 PM #4
Maxxine Maxxine is offline
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Quote:
Originally Posted by Jomar View Post
If pain is mainly on right side, or worse after an injury...I wouldn't think it is fibro related.. you could have fibro plus something else..

I would seek out a highly skilled MD or DO might be better as they tend to look at whole body more than MDs, or possibly expert naturopath, or possibly expert chiropractor..

We have a Fibromyalgia forum with useful sticky threads or here is a current websearch with info on fibro.


From what I read on fibro years ago, what you mention about doesn't really fit..
I have a similar thing-

[Any injury will cause me severe pain for 2 day to 2 weeks]
You might explore our RSD/CRPS forum also if you haven't yet.

I may have missed past posts that have more information on your symptoms & health history...
Thank you!
I will check out the links you posted!

I see a chiropractor. I've also had an injection to try and numb it but it actually made it worse. The neurologist instantly threw out my old diagnoses of CRPS.
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Old 12-18-2020, 09:41 PM #5
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Quote:
Originally Posted by caroline2 View Post
OP: You say "right side of body", I'm worse on right side but it's from hip replacement 10 yrs ago, it's left my body so damaged.....did you have an surgeries.....I see you take quite a few prescrption meds, I refuse to go there except for 1 ibuprofen and 1 extra strength tylenol every 6 hrs...and with food in stomach and also take colostrum for stomach protection...You could be getting side effects from the meds. I talk to people from Canada and UK and I know they don't take supplements per say, but many many do on their own....

I was told I have Fibro back in 1999, but never truly understood all the fibro stuff, as I believe it's many things gone wrong in our bodies, and for one thyroid issues,,,either not getting any thyroid support, the wrong kind or wrong dosage.....HypoT can cause pain issues... My biggest issue is arthritis and damage from surgery which causes more arthritis.....

Hope you can find some resolve......I just commented on MSM and how it does calm pain....
Thank you!

I have had a couple my last one was right before onset of pain. Only it started as a minor rib pain just under my chest. It only went down hill from there. I hate the prescription meds. But I have tried decreasing my meds and the pain was horrible. I have never been able to keep supplements down. They come right back out. I have tried many many times.

But I do have side effects from them all, the side effects are the only consistent thing happening in my body unfortunately.
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Old 12-18-2020, 11:16 PM #6
Lara Lara is offline
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Maxxine, I'm sorry you're still in so much pain.

I'd like to suggest that you read up on "Central Sensitization" and see if it fits in any way.
[also check different spelling Sensitisation]

You can also do a search for other posts on these forums by using the
Search - Click Here
I found many older posts.

Institute for chronic pain-Central Sensitization
Just one website amongst many.

p.s. I would also check out the RSD/CRPS forum link that Jomar posted. There are numerous posts mentioning central sensitization there as well.

Last edited by Lara; 12-19-2020 at 12:17 AM. Reason: add info later
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Old 04-29-2021, 09:06 AM #7
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Default New GP pain area here.

A doctor in my city was prosecuted for prescribing opioids in ways they did not like. Yes I do think this doc was likely doing nothing wrong as my state is much on good doctoring anymore. I just went thru a grilling with my new family doctor about continuing to get a prescription for 30 hydrocodone per month. I take a half pill twice a day as part of about 6 things I do to manage my pain. My primary pain is nerve pain mainly on left side of face and head. It started at corner of my eye some years ago. Discovering nerve blocks consisting of steroids was a big big improvement. Few years later when I was pressed hard to reduce down from 4 hydrocodone per day I took the plunge to try CBD oil. I use it topically. That is how I was able to get down to one opioid per day. I also practice Acupuncture that I learned to supplement my self with a short daily version with help of my MD who used to do my acupuncture. I had to bargain with my new doc to continue the opioid by saying I would discuss my face pain with Mayo Clinic Neurologist when I am there in May. I have learned a lot. I always trust what my body is telling me. Sculptor 44
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Old 04-29-2021, 11:32 PM #8
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I manage a lot of body pain and it could all be worse I believe if I did NOT take MSM powder in glass of water a couple times a day, about a light heaping tsp helps me a couple times daily. Opiods are not for this gal. Side effects alone are horrid.
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Old 04-30-2021, 08:56 AM #9
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Default Our bodies are unique puzzles

I realized I forgot to add to my talk of what I do about pain is tanning for treatment of my severe vitamin D deficiency that was amazingly discovered by a tenacious medical resident in rheumatology in 2006. I had been diagnosed with Sjogrens Syndrome but had been in a pain all over kinda thing that at times was suggested as Fibromyalgia. But that was pointed to also because I was getting weak and had breathing issues and major sleep disturbance. Turns out vitamin D deficiency that is on the severe side can look like Fibromyalgia. My life totally changed during the near year it took to find the way to get my vitamin D up to “farmer levels” like my endocrinologist wants. The pain reduction wasn’t the first big change . It was other things like walking stronger and sleeping better and less respiratory infection. Now tho boy do I quickly see my pain levels move up if I don’t get to tan the 3 days a week I go. When the place closed down for covid it was awful. My pain went up and my sleep degraded and more. My farmer levels of vitamin D are 42 or higher. If you are interested I know this subject inside out and can give anyone more info. At 70 years old it is becoming harder to tan but it’s the minimally treated Myasthenia Gravis that slows me down. Sculptor44
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