Question about New Pain(s) with CPS - Pain Concern

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Question about New Pain(s) with CPS

redeyes2 profile image
11 Replies

Hello,

This is long and complicated, but I am hopeful for advice for next move.

I'm experiencing a new pain; a neck/throat pain. It is a sharp cutting pain and sometimes excruciating. The x-ray came back as degenerative C3, C4, and C5. My doctor has offered no solution and referred me to pain management. I do in Sep.

HISTORY chronic pain chemo induced peripheral neuropathy. The CIPN produced burning skin syndrome with itch, dry skin, creepy crawly sensations, from knees to toes. My lower legs have stayed red no matter what I use since 2013. The ankles still feel like they are in a vice grip and are extremely painful. I have tried neurotin, cymbalta, lyrica, steroid creams, atarax, steroid meds, hydrocodone, demerol, flexuril, amitriptalene, anti-biotic creams, antibiotic pills, NSAIDS and a Seratonin uptake regulator. I also tried hypnosis, creative visualization, meditation, massage, taking l-arginine, horse chestnut, steroid injections, apple cider vinegar and aloe vera as well as various vitamins and collagen protein drinks.

Pentoxyfll keeps pain at bay, but not entirely. I use Flexuril only when the pain gets extreme. I have CIPN in my feet and limpodermatosclerosis, paniculitis, vasculitis and CIPN in my legs. Besides pain I also get swelling from the calves up to my thighs. The most pain below knee. My ankles do not swell, the subcut fat melted off and lowered rom. Some of the toes don't bend and working them manually w PT they have not improved. The upper leg swelling and pain just started in Nov. and makes jeans very uncomfortable.

So now, I have neck pains. They are mostly in front mid neck, but sometimes to lower left, extending to left top shoulder. I get choking syndrome when eating 4-5 times a week and excruciating pain with yawning.

Questions- does degenerative mean arthritis? If so, doesn't that mean the bones? This pain feels more like it's in the soft tissue. Would an x-ray detect if the neuropathy or vasculitis is a factor? I also have vasculitis and a neck CT 3 years ago showed tortuous carotid artery. Something keeps telling me it could be related to the vasculitis or the neuropathy. it does not feel like bone pain. If this situation was yours, what would be your next move?

Thank you in advance. RedEyes... red legs too, hoping my neck don't turn red, too.

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11 Replies

Hello its pins and in your arms people get it when they have slipped discs in neck ,is that where u have them?the creepy crawly feel is pins and needles I have from fibromyalgia and tramadol some painkillers can give you the creepy crawly/pins&needles feel ,lol and I still jump thinking some bug is on my arms. Leg redness could be from discs or if u have fibromyalgia quite often people get fibromyalgia with other illnesses could I suggest you look the fibromyalgia up and see if it fits?the burning feeling in legs or anywhere on body can be from fibro

redeyes2 profile image
redeyes2 in reply to

Thank you for your answer. I have fibromyalgia, but didn't think of that in relation to neck. It does feel more like its in the soft tissue rather than the bones, it could very well be that. I do not get the creepy crawly feeling in my arms only my legs.

Guess I need to go back to my rheumy, to have that checked.

Toes ,sounds like your having slight muscle spasms and that's why they won't flex as easy,it really sounds like fibro to me,I have fibro and was getting pain and after seven drs it took one to explain that's spasms, I got robaxin for spasms which are non addictive and my legs never get as red now.

redeyes2 profile image
redeyes2 in reply to

Hi there curlybacks thanks for the info on fibro, that points me in the right direction on the legs/neck issues. On my toes, the dr called them fused. I do have muscle spasms in my back from an old work injury. I like the idea of getting robaxin for the back spasms and it could be my neck is having spasms, too. I had not thought to ask my dr if spasms would show on x-rays.

My toes are permanently frozen and do not move or bend at all 24/7 for over 5 years now, 2 on one foot and 3 on the other. One dr says I have arthritis in my feet and some of my toes and another dr says no. They turn red and swell, but they do not usually hurt unless they are real swollen. Most nurses think I have cvi when they see my legs and feet, I have been tested for it numerous times and they always say I have great circulation. Who knows maybe that is fibro too? I highly doubt I can get rid of the red legs now as they have been like this 5 years (since 2013) They actually turned brown and black during chemo and had abscesses that had to be drained. I have not had any of that, since being off chemo. I went to dermatology for two years and she had me on all kinds of steroid and antibio creams and ointments, none of them did anything except moisturize my legs. LOL!

The main thing that is new is the neck pain. They said x-ray shows degenerative wear and tear. That may be so, but I honestly do not think that is what is causing the pain, I am referring to as it is not bone pain.

Thanks again for your replies, I really appreciate your input. You've given me several ideas to run by doctors. I will look into Robaxin and ask dr about fibro causing some of this. I had totally forgot about it. LOL! Yes, I have chemo brain. Red

in reply toredeyes2

Oh by the way I got the robaxin for my arthritis and fibro spasms together.look it up ppl mostly get it for arthritis, I broke my toe years ago and I get constant pains in it I think there's arthritis in it but you know yourself it always is there for yrs before MRI even picks up on it,see your back being fused or was it your toes?my ex had fused bones in his spine I made him goto docs and he went just in time or he would've been paralysed.its terrible pain,my sis has it in her toe.

The tramadol does it to me to.

Certain discs effects the arms lower discs the legs.

lovenothate profile image
lovenothate

Hi Red,

I have degenerative wear and tear at C4 and C5 and it was found because I was also experiencing a lot of pain in my neck and throat. It was also not bone pain for me... definitely soft tissue and muscle pain. If left it becomes really quite severe pain and eventually causes a horrendous spasmodic pain in my head too.

I believe that, because of the degenerative discs, the muscles over-compensate for the problem and work themselves way too hard which causes the pain and spasms.

The only thing that works for me in this situation is diazepam. And it works amazingly well. Just for a couple of days or so, I think it’s so that the muscles relax enough to break the cycle.

I hope this gives you some food for thought.

Wishing you all the best,

Will 😃

redeyes2 profile image
redeyes2 in reply tolovenothate

Thank you for that suggestion lovenothate; sounds like the same thing I am experiencing... makes sense... I've never had diazmepan, I'll look it up like you suggested. Thanks for your reply.

LanaKing profile image
LanaKing

Hey so lyrics was great for me let me know if you wanna chat about the details and why and how I went off it after healing from major back surgery. I didn’t read all of your story so that I’m not biased.

redeyes2 profile image
redeyes2

Thank you all for your wonderful replies. This past month I have been collecting data from all my different drs and their labs and imaging tests; so I can present the full picture for my first ever pain management appt. My CT scan for my abdomen; surprisingy picked up on severe diffuse spondylosis in my spine as well as the curvature of the spine. I never knew it could see through you like that!! LOL!!

I'm in good spirits in spite of not getting much sleep (due to pain and insomnia) and narcolepsy. That reminds me I still have to send emails to all my professors... for disability accomadations. (another pain; but grateful they do it!) Thanks red eyes ... cheers!!

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