Pain only on right side of body

Posted by athenamom @athenamom, Jan 22, 2024

Hello! This is uncomfortable for me to do, I’m not usually a forum user.

I have been dealing with chronic pain for around fifteen years, and the pain was originally focused on the right side of my neck. After a few years it spread to the right side of my face and my right wrist/fingers, and has now reached my right lower back, thigh, calf and occasionally the top of my right foot.

I have always wondered about autoimmune disorders (5 out of 7 of my maternal aunts/uncles have an autoimmune disorder), but I tested negative for ANA. I did have shingles on the right side of my face around 20 years ago, had multiple cysts, fibroids and endometriosis resulting in needing a hysterectomy, and very common unexplained rashes.

Thank you for your understanding and time, it is not an easy process to have so much pain with very little understanding or guidance.

Take care!

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for Misty123 @leigh123

Ask away, happy to answer any questions.. through my journey I’ve found doing my own research and speaking with others more helpful than any of the drs.

I’ve been put through the rings, I’ve seen multiple neurosurgeons, neurologists and been doing hydro, physio, mirror box therapy and graded imaginary 2-3 times a week for the last 2 years, they even made me complete a 6week pain course which was a complete waste of time, I don’t get how they expect being mindful to relieve this awful pain, I held back but so wanted to tell them where to shove it!

I got discharged from hospital last week after being on ketamine for 8 days, only to have had my meds cut back, be back on opioids and to be told that there is nothing else my pain specialist can do, so now I have to start from scratch with a different pain specialist that is a retired neurosurgeon.
Fingers crossed this new Dr is able to help me

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hello, i was reading your post i was wandering if the pain is the same as mine not 100%, i have pain on the right lower side of the abdomen and in between hip and thigh , ty so much

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Profile picture for Misty123 @leigh123

Hi I am dealing with a very similar issue..
I had a work injury almost 2 years ago, pain started in my right shoulder and right arm, ultrasound showed bursitis I had 2 cortisone injections and underwent physio twice weekly for 6 months with no improvement, dr then ordered mri of shoulder and brachial plexis all results were normal. Next step was cervical mri that showed clear disc bulge, degenerative disease and spinal cord compression at c5/6 and c6/7, I had a c7 nerve root epidural which only caused the pain to worsen and spread to the right side of my neck. 12 months after original injury I underwent adfc at c6/7, waking up in icu I had the right side of face burning and tingling fast forward 6 weeks I was complaining about worsening pain to the neurosurgeon, he sent me for an EMG and nerve conduction tests which all came back normal. 3 month's after surgery I still suffer all the same pains only more severe I was diagnosed with upper quadrant CRPS 6 months post surgery. Fast forward another 6 months I now have the same burning throbbing pain down my thoracic back, right leg and into my foot. Last week I was admitted to hospital for a 7 day ketamine infusion, they suspect it may be autoimmune and did a lumbar punch to check for ms and redid EMG and nerve studies only to find permanent nerve damage at c7, im still awaiting lumbar punch results and the ketamine did nothing for the pain.
I have this week been diagnosed with right sided spinal CRPS so at present the pain specialist and neurologist are discussing either a spinal stimulator or nerve ablation as the next step

Keep advocating for yourself, and I really hope you get relief and find answers real soon xx

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Hello,
I also had an ACDF for C5-6 and 6-7 and since then, I am being pinched in my neck, like something is stuck. Over the last 4 years, since surgery, I've been losing strength in my right arm and it aches so bad. In the last year, my chest feels like it's glued together and now my leg is starting to give way. Imaging all shows that it's "fine" but my neck clunks and sounds funny and no one can figure out what is actually wrong. The worst part is doctors don't seem to care. They give up because they can't find it on imaging. I don't know what else to do anymore. Any other suggestions or ideas you might have would be great.
Thanks

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Profile picture for coachgail29 @coachgail29

Hello,
I also had an ACDF for C5-6 and 6-7 and since then, I am being pinched in my neck, like something is stuck. Over the last 4 years, since surgery, I've been losing strength in my right arm and it aches so bad. In the last year, my chest feels like it's glued together and now my leg is starting to give way. Imaging all shows that it's "fine" but my neck clunks and sounds funny and no one can figure out what is actually wrong. The worst part is doctors don't seem to care. They give up because they can't find it on imaging. I don't know what else to do anymore. Any other suggestions or ideas you might have would be great.
Thanks

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I haven’t got any advice unfortunately I’m at a crossroads myself.
I’ve since had several nerve blocks in both lumbar and cervical, only thing they done was make pain flair for a week or so after each
8months ago I had a week long trial of a dual spinal cord stimulator, both cervical and lumbar, was the worse week of my life, I could feel the buzzing on the no feel setting and even after it was removed for a few weeks

I recently had a leg vascular ultrasound to check for circulation issues, all came back clear, my entire right side still suffers with burning aching pressure and colour and temperature changes

All my treating drs agree on right sided ipsilateral CRPS Diagnosis.

I’ve had the workers compensation Dr stating that lower limb symptoms could be due to an underlying undiagnosed condition such as osteoarthritis, but all my X-rays are clear of this

At present my pain specialist is just trying out new medications to help control the pain, I found norspan pain patches to be the biggest relief but unfortunately had an allergic reaction and broke out in hives, we’ve also tried methadone for pain which only lasted 3 days as I could not stop vomiting, so at present I am back on opioids and not knowing what next steps are

Sorry your not having much luck, wish I could help more

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When you have a virus, it is forever in the central nervous system. In addition to severe pain on one side (like a frozen shoulder pain), I had mono like symptoms. Try lysine (500 mg twice a day) plus iodine (12.5 mg once a day) and see what happens. If pain decreases do this regime for three more weeks to put virus in remission.

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Profile picture for Misty123 @leigh123

Ask away, happy to answer any questions.. through my journey I’ve found doing my own research and speaking with others more helpful than any of the drs.

I’ve been put through the rings, I’ve seen multiple neurosurgeons, neurologists and been doing hydro, physio, mirror box therapy and graded imaginary 2-3 times a week for the last 2 years, they even made me complete a 6week pain course which was a complete waste of time, I don’t get how they expect being mindful to relieve this awful pain, I held back but so wanted to tell them where to shove it!

I got discharged from hospital last week after being on ketamine for 8 days, only to have had my meds cut back, be back on opioids and to be told that there is nothing else my pain specialist can do, so now I have to start from scratch with a different pain specialist that is a retired neurosurgeon.
Fingers crossed this new Dr is able to help me

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I hear you and agree with everything youre saying.
It can be incredibly frustrating, when nothing is working, no one is getting it or listening or they just can't find a solution. Once you find the right Drs, DO NOT LET THEM GO! LOL Because that already is 80% of the stress. What groups have you joined?
Feel free to private message me. Id love to chat more.

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I’m in Australia, I follow a lot of the global CRPS and cervical myopathy pages.
Doing my own research a lot of the time they go hand in hand, I’ve also noticed a lot of CRPS patients have autoimmune disorders like Hashimotos (myself included)
At the moment I rely solely on my GP, Phycologist and Pain Management Specialist, I wish I could find a neurosurgeon that would take me seriously, regardless of my CRPS diagnosis I still swear there is something wrong with my spine that they just haven’t found.

I’m still on pain meds (opioids) I have noticed I need to swap my medication around every 6months or so as they stop working as well
They are now saying we have exhausted all measures and unfortunately this is just something I need to learn to live with

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Profile picture for cjuels @cjuels

Mine is also going all on my right side. My upper area has gotten better, but I'm now stuck with this constant leg pain and discoloration from my right hip down to my foot. My pain has decreased and improved ALOT since this all started in April of last year. So I'm almost hitting a year here.....
I'm still looking for the actual answers and diagnosis. Some drs think I have it and some don't. I was prescribed, amitriptyline by my PCP, that I have not started yet and my pain specialist just prescribed me with Celecoxib, that I have also not tried yet. So if anyone has and experienced side affects, increased the pain, or if it helped, I'd love to hear comments and recommendations 😊

Keep fighting 💪 💖 ,

Juels

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Hi
I’ve been on amitriptyline for just over 3 years, started off at 10mg and now on 50, it helps a little with sleep of a night but I struggle to wake of a morning, I feel like a zombie my eyes just keep rolling in my head, also since starting this med I have also put on 25kg

My Pain Dr now want to add in cymbalta but after I’ve I’ve read online about it I’m very sceptical

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Profile picture for cjuels @cjuels

I hear you and agree with everything youre saying.
It can be incredibly frustrating, when nothing is working, no one is getting it or listening or they just can't find a solution. Once you find the right Drs, DO NOT LET THEM GO! LOL Because that already is 80% of the stress. What groups have you joined?
Feel free to private message me. Id love to chat more.

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I just want to mention if you chat privately, then the rest of us don’t get to benefit from your conversation!

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Profile picture for Misty123 @leigh123

I’m in Australia, I follow a lot of the global CRPS and cervical myopathy pages.
Doing my own research a lot of the time they go hand in hand, I’ve also noticed a lot of CRPS patients have autoimmune disorders like Hashimotos (myself included)
At the moment I rely solely on my GP, Phycologist and Pain Management Specialist, I wish I could find a neurosurgeon that would take me seriously, regardless of my CRPS diagnosis I still swear there is something wrong with my spine that they just haven’t found.

I’m still on pain meds (opioids) I have noticed I need to swap my medication around every 6months or so as they stop working as well
They are now saying we have exhausted all measures and unfortunately this is just something I need to learn to live with

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I just wanted to say you haven’t exhausted any of your resources YET! You were just at the wrong doctor and that’s why they ran out of options! I was at a neurosurgeon for 20 years and that was never going to yield any fruitful benefits, I needed to be with an orthopedic surgeon. I suggest you switch over and see what happens. I am 68 and been suffering for 30 years with various physical issues. My osteoarthritis of 30 years was not osteoarthritis at all, but gout, arthritis! And the pain was a very easy fix! I learned of that fix here. It was tart cherry capsules (I like ZAZZEE) once I experience the miracle I went on to ask the doctor to test and sure enough I had high uric acid levels and so I went on allopurinol medicine. Gout is inherited and I don’t know why all the stupid doctors let me suffer for 30 years except that they saw osteoarthritis in the x-rays and so that’s what they presumed was causing the pain. I would test every couple years for RA rheumatoid, but I kept getting a negative response. My whole body is loaded with osteoarthritis, but that doesn’t cause my pain. What is in my joints being produced the uric acid is the issue. My doctors didn’t find the answer, I did with the help of this online forum! We do have to learn to live with aging, but we can continue and must work on figuring out what we can heal. I have had many joint replacements and they solve a lot of problems so I can get my life back but on top of that, there are my muscular issues Which don’t get resolved when you have the joint replacements. I must add an hour and a half of exercise a day at 68 to stay a lot more pain-free. I have been on low-dose opioid for 25 years very stable because I have tailbone pain that they won’t operate on.. I am very lucky that I have doctors who support me because if it weren’t for the low-dose opioid at 68 I probably wouldn’t be able to do all the exercise necessary because I would feel defeated before I even start. I am very careful with my medication use. My body adjusted Many years ago and therefore it is just part of who I am. A normal person has hormones and serotonin, which is released to make them feel good enough to do the exercise exercises with a normal body. God didn’t give me a normal body. If I look at my grandmother‘sand aunts, they all suffered terribly with arthritis at my age. I am overcoming the inactivity that comes with bodily degeneration. Don’t give up hope, and even if you get out of bed in the morning and wait till the sunshines to figure out what you can do every day that seems right - take those moments!

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Profile picture for Misty123 @leigh123

I’m in Australia, I follow a lot of the global CRPS and cervical myopathy pages.
Doing my own research a lot of the time they go hand in hand, I’ve also noticed a lot of CRPS patients have autoimmune disorders like Hashimotos (myself included)
At the moment I rely solely on my GP, Phycologist and Pain Management Specialist, I wish I could find a neurosurgeon that would take me seriously, regardless of my CRPS diagnosis I still swear there is something wrong with my spine that they just haven’t found.

I’m still on pain meds (opioids) I have noticed I need to swap my medication around every 6months or so as they stop working as well
They are now saying we have exhausted all measures and unfortunately this is just something I need to learn to live with

Jump to this post

I just want to ask if you’ve been tested for gout, high uric acid levels? After 30 years of suffering and reacting, as if I have autoimmune disorders which they constantly tell me I didn’t. I ended up with gout higher uric acid levels. It was a miracle. I had Four gout, flares when I was 42 and after I figured out a home remedy to get rid of the flares, nobody ever looked at the possibility of gout as I aged it truly was a miracle to get on the allopurinol medicine and to figure that out from someone here who suggested Tart cherry capsules. I like ZAZZEE brand I buy on Amazon, but then I asked for testing and then I asked to be on the medicine. It fixed so many things my body it was crazy! At 68 my my muscular problems are resolved by going to an MFR therapist twice a month. It took me a couple tries to find a good one which I pay out-of-pocket for and according to all of my doctors and various doctors I will be going for my facial release the rest of my life as my bone structure (the scoliosis and degenerative disc condition) continually ruin my posture, so the muscle muscles tug as they are glued together on the spine, but because I am an artist and have worked seriously long hours and caused my muscles to be dysfunctional with repetitive movements. I spent an hour and a half on a stationary bike every day and I walk a mile in the morning and in the afternoon with the dog and all of these, I do very leisurely so I’m not the best example of someone who exercises to get their heart rate up the highest they can however at 68 It is solving a shit load of my problems, and I am much happier with the endorphins that get released and the pain I don’t suffer with while I sleep because I sleep much deeper than I would if I wasn’t active. I hope some of that helps.

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