Information - Question

Posted by soccer1477 @soccer1477, Mar 15 7:03am

Hello everyone,
I will try to make this post short, I have been in several groups as I have issues with my spine and have been dealing with pain, for now, two years, everything started in 2022 after working on the yard and working out, Pain in my upper pecs both sides and my upper back, a week later fasciculations, two weeks later horrible pain in the upper back that traveled under arm and pectorals, then March 2023 my hamstring started hurting to a point that I couldn't walk very well so started using a walking stick, this pain was so bad that it will cramp up my leg and will not let me drive, so since then I have not been able to drive as if I sit for too long my leg will lock up.
I have a 4mm herniated disc on my C5-C6, three herniated and 6 bulges in my Thoracic, and issues with my L4/L5/S1 EMG came out with Denervation of the paraspinal muscles on those 3. All surgeons say no need for surgery (2 Ortho 1 Neuro) but have one Orhto that feels is my herniated disc cervical and wants me to do a myelogram but I'm scared of any side effects as I'm already in pain.
I have had 8 MRIs, 3 EMGs, and countless blood tests. I have been told a few different scary diagnoses, that Thank God during the time and additional testing were wrong.
I have had 5 epidural shots, 2 on cervical with no success, 1 in thoracic with some success on my pecs pain but the pain is back, and 2 on lumbar the most recent one 02/29 on L5 and S1

6 Days ago out of nowhere both of my feet started hurting and started feeling the pins and needles, the pain was so bad that I felt that both feet wanted to cramp depending on the position, and I couldn't sleep. During the day I felt a small vibration on both legs, weird like a zoom or electricity. This has been going on since then, I'm taking Gabapentin 600 mg 2 per day, and didn't help much, but I have been taking it for months, Methocarbamol, tramadol, also Ozempic as I need to lose some weight, but not diabetic. Dr. swapped me from Gabapentin to Lyrica but I stopped Lyrica as that was the time frame my feet started hurting so bad. I have called my Pain management doctor. and m Neurologist but will only be able to see them in two weeks, so far everything I read on the internet points to Peripheral Neuropathy, I was wondering if anyone had any similar experiences, pain management got me into MethylPRENISolone for 6 days of treatment, not sure what is supposed to do or how it would help.
I'm just sad that I have been dealing with pain for now 2 years and thought I was making some kind of progress on recuperation but this new pain is really pushing me back as I don't understand very well what could it be but based on what I'm reading and understanding is something new that I will need to learn how to live with.
Thanks,

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in reply to @soccer1477 I am so sorry! I understand chronic pain and could write a book about the same. I do know that Predisone can often be a "miracle drug" in terms of its many uses, and the short course of it may be helpful to you. I would be careful with the Gabapentin, especially if used long term. While it can be very helpful, like many other drugs it comes with some long term side effects that are of concern. I was given it for a short time, and while it was helpful, the side effects outweighed any potential solace the drug gave. Have you tried a TENS unit? I received one a few months ago and use it everyday, as does my sister who has neuropathy in her foot, a result of chemo drugs.
I do not see any opiates on your drug list. Is there a reason? I understand 1) many do not like to take these drugs do to dependence upon them and 2) some doctors do not like to prescribe them. In my case, I have been on Norco for years, simply because there is nothing else that touches my 24/7 chronic pain that is now impacting my quality of life. A discussion will be held soon with my PCP about an alternative. I am no concerned about being dependent upon this drug or others like it, simple because I need them to function. I am very active and without the opiates, I am not sure I would be here supporting you this morning. I see you are taking Tramadol. I cannot take that drug, and even when I tried, it was of no use. For many years I was on a pain patch and overall, that was the best solution until I was forced to stop due to financial reasons. I was given Methadone instead, still with a script for Norco for breakthrough pain. However, the Methadone ruined my teeth because not only do I have dry mouth, by the drug is made with a sugary substance and many who use this drug wind up like me, losing teeth.
While it was helpful, and I was recently given it again, I am now allergic to it.
Have you ever tried Yoga? This is something I am just getting interested in, after seeing a program on public television. Yoga can be very helpful for the body and mind, and perhaps you would consider a try. Many insurance companies now cover this along with other forms of integrative medicine.
Surely an honest talk with your doctor, assuming he/she will listen, is in order. I give out such great advice, but do not always apply the same to myself. I finally told my PCP yesterday that I am having over the top low back pain that has now progressed to weakness in both of my legs. An MRI has been ordered, and I am not dealing well with the fact that this once very active, healthy body has now fallen apart. I understand the intensity of chronic pain on both a mental and physical level, and as I once posted, I sometimes walk around my living room with horrible pain, saying, "this must be what death feels like."
Again, talk to your doctor and explain that your pain has reached a new plateau that is having a direct impact on your quality of life. I have plans to do the same next month, and I can already hear my doctor giving me a lecture on "black box" warnings. The way I see it, there is little they can do for my pain, I have a rare, incurable disease, so drug dependence and "black box" warnings mean little to me in terms of the overall picture.
I do hope you get some relief soon. Again, my heart goes out to you.

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@frances007
Thank you so much for the reply and the information. I have been a little scared of Gabapentin as the Dr. has me on a high dose but I really do not see improvement, at the beginning I thought it helped me with the Hamstring pain, but now I'm not even sure it does, they have me on 600 mg three times a day I only take it twice a day. Never used TENS Unit. Just googled it and I guess you use it on your legs or wherever you have pain, I will have to investigate a little further.
No specific reason on the opiates, I guess my doctor doesn't like prescribing them, he has me on Tramadol and it helps, 100 mg three times a day but I only take 50 mg when I just cannot handle it anymore.
No Yoga yet, the pain on my pecs and back stopped me even from carrying grocery bags, so I do what my PT makes me do which most times are good exercises, I try to walk every day as much as I can, but these new pains and feelings on my feet are scaring me.
You are correct, I cannot wait to talk to both, as i need to figure out what is going on with these new pains on my feet.

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I use the TENS unit wherever the pain is located, shoulder, back, buttocks etc. You can get one on Amazon for less than $40 and they work very well. You can "charge" the device easily and there are many "programs" to choose from. In fact, my sister got one after I showed her the one I received and it is helping her with some neuropathy in her foot. You can adjust the time of the treatment and things of that nature. I wear mine around my apartment and even while out shopping.
I understand the "food issue" as my sister has a very serious problem in this regard, a result of chemo drugs. That gabapentin is very useful, but dangerous according to my urologist and pharmacist, especially if used long term. I had to go off of it because I began feeling suicidal, a common side effect, and this scared me. I too walk a lot, and also lift weights each day to maintain muscle mass, as I have lost a lot of weight. The tens unit might be a game changer for you. Amazon.

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@soccer1477

@frances007
Thank you so much for the reply and the information. I have been a little scared of Gabapentin as the Dr. has me on a high dose but I really do not see improvement, at the beginning I thought it helped me with the Hamstring pain, but now I'm not even sure it does, they have me on 600 mg three times a day I only take it twice a day. Never used TENS Unit. Just googled it and I guess you use it on your legs or wherever you have pain, I will have to investigate a little further.
No specific reason on the opiates, I guess my doctor doesn't like prescribing them, he has me on Tramadol and it helps, 100 mg three times a day but I only take 50 mg when I just cannot handle it anymore.
No Yoga yet, the pain on my pecs and back stopped me even from carrying grocery bags, so I do what my PT makes me do which most times are good exercises, I try to walk every day as much as I can, but these new pains and feelings on my feet are scaring me.
You are correct, I cannot wait to talk to both, as i need to figure out what is going on with these new pains on my feet.

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@soccer1477, you may find these related discussions helpful:
- Possible cause of some neuropathies?: https://connect.mayoclinic.org/discussion/possible-cause-of-some-neuropathies/
- Share Resources: Advice from Professionals on Spine Health & PN: https://connect.mayoclinic.org/discussion/advice-from-professionals/

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@frances007

in reply to @soccer1477 I am so sorry! I understand chronic pain and could write a book about the same. I do know that Predisone can often be a "miracle drug" in terms of its many uses, and the short course of it may be helpful to you. I would be careful with the Gabapentin, especially if used long term. While it can be very helpful, like many other drugs it comes with some long term side effects that are of concern. I was given it for a short time, and while it was helpful, the side effects outweighed any potential solace the drug gave. Have you tried a TENS unit? I received one a few months ago and use it everyday, as does my sister who has neuropathy in her foot, a result of chemo drugs.
I do not see any opiates on your drug list. Is there a reason? I understand 1) many do not like to take these drugs do to dependence upon them and 2) some doctors do not like to prescribe them. In my case, I have been on Norco for years, simply because there is nothing else that touches my 24/7 chronic pain that is now impacting my quality of life. A discussion will be held soon with my PCP about an alternative. I am no concerned about being dependent upon this drug or others like it, simple because I need them to function. I am very active and without the opiates, I am not sure I would be here supporting you this morning. I see you are taking Tramadol. I cannot take that drug, and even when I tried, it was of no use. For many years I was on a pain patch and overall, that was the best solution until I was forced to stop due to financial reasons. I was given Methadone instead, still with a script for Norco for breakthrough pain. However, the Methadone ruined my teeth because not only do I have dry mouth, by the drug is made with a sugary substance and many who use this drug wind up like me, losing teeth.
While it was helpful, and I was recently given it again, I am now allergic to it.
Have you ever tried Yoga? This is something I am just getting interested in, after seeing a program on public television. Yoga can be very helpful for the body and mind, and perhaps you would consider a try. Many insurance companies now cover this along with other forms of integrative medicine.
Surely an honest talk with your doctor, assuming he/she will listen, is in order. I give out such great advice, but do not always apply the same to myself. I finally told my PCP yesterday that I am having over the top low back pain that has now progressed to weakness in both of my legs. An MRI has been ordered, and I am not dealing well with the fact that this once very active, healthy body has now fallen apart. I understand the intensity of chronic pain on both a mental and physical level, and as I once posted, I sometimes walk around my living room with horrible pain, saying, "this must be what death feels like."
Again, talk to your doctor and explain that your pain has reached a new plateau that is having a direct impact on your quality of life. I have plans to do the same next month, and I can already hear my doctor giving me a lecture on "black box" warnings. The way I see it, there is little they can do for my pain, I have a rare, incurable disease, so drug dependence and "black box" warnings mean little to me in terms of the overall picture.
I do hope you get some relief soon. Again, my heart goes out to you.

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I am sorry you are experiencing pain from your spinal issues and that you are working with your doc toward a solution.

I am wondering if this neuropathy in your limbs over the last six days is a separate issue? I have Small Fiber Polyneuropathy like you describe in my feet and calves. It was caused by B6 Toxicity. Are you taking supplements with over 100% RDA or eating a diet High in B6? The website http://www.understandingb6toxicity.com or FB page Understanding B6 Toxicity Using Western Research may be helpful to you.

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in reply to @smutchler A closer look at the recent MRI from several months ago indicated atrophy of the paraspinous musculature, and apparently this is something that my doctor is concerned about, since I appear to be having symptoms of increased atrophy: balance issues, weakness in my legs, pain 9/10. However, the medication and tens unit have been helpful. I will be seen by a back surgern soon, the same one who removed the Tarlov Cysts several years ago. I can only hope for a positive outcome, even if surgery is recommended.

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@frances007

in reply to @smutchler A closer look at the recent MRI from several months ago indicated atrophy of the paraspinous musculature, and apparently this is something that my doctor is concerned about, since I appear to be having symptoms of increased atrophy: balance issues, weakness in my legs, pain 9/10. However, the medication and tens unit have been helpful. I will be seen by a back surgern soon, the same one who removed the Tarlov Cysts several years ago. I can only hope for a positive outcome, even if surgery is recommended.

Jump to this post

All the best in your continuing treatments. I, too, have had some relief from TENS unit. While it is good to have the MRI info, I am sure you are concerned about what the future holds.

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in reply to @smutchler Thank you. I know I don't know everything, but I do know how to read an MRI report, a result of living with a critical care nurse who worked with me in the litigation department of a large insurance company, who helped myself and my coworkers analyze medical reports in an effort to evaluate certain types of catastrophic claims, especially those involving one's back. So, when my doctor told me, "it is all arthritis" I knew he was wrong, in light of not only the objective findings, but also the narrative by the radiologist. I was referred to a pain management doctor who I saw years ago. Imagine a 5 minute visit, during which he told me everything was "normal" and that I needed an injection into my sacral spine, and he suggested all of this without examining me, while billing the insurance company for the same. At that point, he lost not only my respect, but my unwillingness to ever return to see him, even if the injection "might" have helped. He agreed with me that the costly procedure would be a "bandaid." Go figure

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