1. < Chronic Pain

Scoliosis: In pain morning noon and night

Posted by meandyou @meandyou, Apr 1, 2020

I have scoliosis. Have had since 12yrs I finally found a pain management dr. And had my pain under control with medication. Then. my state switched me to Obama care! My clinic refused it and they told me i would not be able to use there service any more. Im in pain all the time Ive done p.t. tens injections exercise heat ice nothing else works but medication! I feel like im walking around with a ten lb. BOWLING BALL on my shoulders. Im just so tired from hurting every day!😪

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

nancyrod69 | @nancyrod69 | May 14, 2020
In reply to @lilypaws "@nancyrod69 I feel you might need to see a pain doctor at Mayo and Maybe a..." + (show)
@lilypaws

@nancyrod69 I feel you might need to see a pain doctor at Mayo and Maybe a surgeon. I have severe degeneration of my spine (no fractures though) that caused scoliosis, plus L-4,5 and S-1 has stenosis. I am going to have a fusion from T10 to my pelvis on June 9th. It's a big surgery, but I have done everything possible to now have surgery. My doctor tells me I need the surgery and the pain doctor told me there was no more she could do for me and I have done everything possible too. I have been on Tymlos for 6 weeks, which I had to be before the surgery. Bless your heart. All these meds can cause side effects. Tymlos can cause bone cancer. I am mostly osteopenia, but close to osteoporosis in places. They wanted my spine strong. They told me I had to be on it for 2 years, but the endocrinologist wants me to ask the surgeon if I can get off of it after I heal from the surgery. He doesn't think I need to be on it for 2 years. Take care and I hope you get better. My thoughts and prayers are with you.

Jump to this post

Thanks so much for your info lilypaws! Yes , I will discuss with my dr. further and see a pain specialist or a spinal specialist . Appreciate your prayers so much, mine are with you also!

REPLY
1 reply
nancyrod69 | @nancyrod69 | May 14, 2020
In reply to @nancyguy "I have 4 vertebral fractures (one is completely compressed; the others are partially compressed).. An endocrinologist..." + (show)
@nancyguy

I have 4 vertebral fractures (one is completely compressed; the others are partially compressed).. An endocrinologist told me the only med I can take to rebuild bone density is Evenity because I had radiation for breast cancer in 2009. I refused Evenity for the same reason you refused it--the possibility of dire side effects. Evenity was turned down for approval by the FDA until April 2019. I was refused surgery by a spinal surgeon because of the porosity of my bones and because of my age. My physical therapist did myofascial release therapy (massage), and taught my son how to do it. This has helped so much that I rarely take a pain med (tylenol or ibuprofen occasionally). Walking and simple exercises alleviate pain and stiffness greatly. I am taking Fosamax once a week to "supposedly" prevent further bone loss; however, I do not like thinking about the possible side effects it can cause. Also, it does not increase bone density.
I hope everything goes well for you--that you get the help you need. Saying a prayer for you--God's blessings!
Nancy Guy

Jump to this post

Thank you Nancy Guy for your encouraging words ! Prayers and Many Blessings to you also!

REPLY
stimme | @stimme | May 15, 2020
In reply to @contentandwell "@lilypaws If you only have osteopenia I think they may say you can get off of..." + (show)
@contentandwell

@lilypaws If you only have osteopenia I think they may say you can get off of Tymlos, I will be interested in hearing what they do say. My osteoporosis was neglected for five years by my local PCP after being diagnosed with osteopenia so now it is advanced osteoporosis. The endocrinologist I went to at MGH wants me on Reclast. I had planned to wait until April, after I had the MRI to detect if my liver cancer had metastasized but of course all of that has been put off. I'm doing everything I can though in the way of diet and exercise. I was very reluctant to do Reclast but at this point I just want to get something done.

@stimme I just read yesterday that it is not true that you should not take ibuprofen with COVID. I would check that though before taking it, but even if it is true I think it's only if you do have COVID. I can only take acetaminophen anyway so that's not a concern for me.
JK

Jump to this post

By chance, I ran out of Ibuprofen and bought Anadin Extra. I find this so much more effective. For me, it works very quickly and it will last for 24 hours. So while I have a stock of six packets of Ibuprofen here I use the Anadin Extra instead!

REPLY
1 reply
stimme | @stimme | May 15, 2020
In reply to @nancyrod69 "I too am in constant pain. I was on Prolia for a few years ,when I..." + (show)
@nancyrod69

I too am in constant pain. I was on Prolia for a few years ,when I had 3 vertabrae fractures ,T6,7,8 And a fractured rib! I then had a total bone scan and was told I have severe osteoporosis and scoliosis ,spine shaped like an S. Went to and Endocrinologist and she suggested I take an injection, monthly ,of a new med called Evenity. I was scheduled for tomorrow to get first shot ,but canceled after reading up on Evenity and side effects! Can cause strokes ,heart palpitations etc. It was actually not approved in 2017, then was approved after much pressure! Would rather be in pain than suffer some of the side effects! Maybe I should see a spinal specialist??? Took so long to finally get in to see Endo dr.as a new patient !

Jump to this post

There are three videos about scoliosis which I have respect for and use. The first is a lecture in which he demonstrates how to evaluate the amount of correction possible.

Dr John Bergman (you bend into the convexity of the curve)


The second is a series of upper body exercises by an oriental therapist named Austin Goh

Austin Goh (twice a day for three weeks then comment)


and the third is an interview by a yoga teacher of Dr Loren Fisman ..in which he cites a huge success rate, for example, taking someone from a 32-degree scoliosis to 16 degrees using two yoga moves - the side plank for the lower spine (concentrating on the concave side) and the Half Moon for the Thoracic spine.)

Dr Loren Fishman

The side Plank at 20:35 and the Half Moon at 24:05


This is a better example of the side plank

Vasisthasana (Side Plank Pose) Benefits, How to Do & Contraindications by Yogi Ritesh - Siddhi Yoga


Of course, these, if they will work, will take a time to succeed and I, personally, generally find a reaction in the early stages (except with Austin Goh's exercises) so that I cannot go straight into a series but have to approach it gradually. (I also have myelofibrosis with a swollen spleen and prostate cancer so I have to be circumspect how I do the exercises!

Meanwhile, I use a terrific cream called Puraganic which contains CBD, MSM, Arnica, rosemary and Turmeric. This is very effective. I also take Anadin Extra, the effect of which lasts for 24 hours for me.

Hope this helps.
Roger

REPLY
lioness | @lioness | May 15, 2020
In reply to @stimme "By chance, I ran out of Ibuprofen and bought Anadin Extra. I find this so much..." + (show)
@stimme

By chance, I ran out of Ibuprofen and bought Anadin Extra. I find this so much more effective. For me, it works very quickly and it will last for 24 hours. So while I have a stock of six packets of Ibuprofen here I use the Anadin Extra instead!

Jump to this post

@stimme What is this med is it Anacin Extra ? I never heard of Anadin Extra .

REPLY
1 reply
lilypaws | @lilypaws | May 15, 2020
In reply to @nancyrod69 "Thanks so much for your info lilypaws! Yes , I will discuss with my dr. further..." + (show)
@nancyrod69

Thanks so much for your info lilypaws! Yes , I will discuss with my dr. further and see a pain specialist or a spinal specialist . Appreciate your prayers so much, mine are with you also!

Jump to this post

@nancyrod69 I'm glad I was of help. Prayers are strong and I appreciate yours too. Tacke care and hope you find a solution.

REPLY
lilypaws | @lilypaws | May 15, 2020
In reply to @contentandwell "@lilypaws If you only have osteopenia I think they may say you can get off of..." + (show)
@contentandwell

@lilypaws If you only have osteopenia I think they may say you can get off of Tymlos, I will be interested in hearing what they do say. My osteoporosis was neglected for five years by my local PCP after being diagnosed with osteopenia so now it is advanced osteoporosis. The endocrinologist I went to at MGH wants me on Reclast. I had planned to wait until April, after I had the MRI to detect if my liver cancer had metastasized but of course all of that has been put off. I'm doing everything I can though in the way of diet and exercise. I was very reluctant to do Reclast but at this point I just want to get something done.

@stimme I just read yesterday that it is not true that you should not take ibuprofen with COVID. I would check that though before taking it, but even if it is true I think it's only if you do have COVID. I can only take acetaminophen anyway so that's not a concern for me.
JK

Jump to this post

@contentandwell I only have osteopenia, but some parts close to osteoporosis. The endocrinologist said if I do go off of Tymlos that he would put me on something else and I can't remember what they were, but it has to be oked by my surgeon to go off of it after I'm healed from the surgery. Jeanie

REPLY
nancyguy | @nancyguy | May 15, 2020
In reply to @lilypaws "@nancyguy I feel so sad for you. Did you see an endocrinologist at Mayo? My endocrinologist..." + (show)
@lilypaws

@nancyguy I feel so sad for you. Did you see an endocrinologist at Mayo? My endocrinologist put me on Tymlos to strengthen my bones before my surgery. Can't you go on that for six weeks and then I'm having surgery, but have to continue it till I heal. My endocrinologist didn't think I needed to be on it for 2 years, but I have to ask my surgeon.. Bless your heart, I will keep you in my thoughts and prayers and thank you for your prays for me. I'm positive it will work, because they tested me first to see if it would.

Jump to this post

Thank you, lilypaws, for your prayers and your comments. My endocrinologist is with the Cleveland Clinic. I live in Ohio and am not able to see someone at Mayo. I understand Mayo was rated No. 1 in U.S., and am glad that you most likely are "in good hands." A special prayer for you for successful surgery and good health through the coming years. I have much to be thankful for; my PT told me that my condition would stabiliize, and he was right, because the myofascial treatments relieved the pain greatly, and I have a wonderful son who is continuing the therapy. My PT is excellent; he is with the Cleveland Clinic. He treated me about three times a week for a period of six weeks, and taught me simple exercises
.God's blessings from Nancy G.

REPLY
1 reply
JK | @contentandwell | May 15, 2020
In reply to @nancyguy "I have 4 vertebral fractures (one is completely compressed; the others are partially compressed).. An endocrinologist..." + (show)
@nancyguy

I have 4 vertebral fractures (one is completely compressed; the others are partially compressed).. An endocrinologist told me the only med I can take to rebuild bone density is Evenity because I had radiation for breast cancer in 2009. I refused Evenity for the same reason you refused it--the possibility of dire side effects. Evenity was turned down for approval by the FDA until April 2019. I was refused surgery by a spinal surgeon because of the porosity of my bones and because of my age. My physical therapist did myofascial release therapy (massage), and taught my son how to do it. This has helped so much that I rarely take a pain med (tylenol or ibuprofen occasionally). Walking and simple exercises alleviate pain and stiffness greatly. I am taking Fosamax once a week to "supposedly" prevent further bone loss; however, I do not like thinking about the possible side effects it can cause. Also, it does not increase bone density.
I hope everything goes well for you--that you get the help you need. Saying a prayer for you--God's blessings!
Nancy Guy

Jump to this post

@nancyguy I am following these posts because I have not decided what my course of action will be to improve my osteoporosis. My endocrinologist recommends Reclast. She is the head of the Bone Density Clinic at Mass General in Boston and has excellent credentials so at some point, I feel I need to have confidence in her recommendation. Unfortunately, none of these drugs are great options though, they all can have some severe side-effects. I hope things go well for you with Fosomax and that you do not suffer side-effects.

@stimme I had not heard of Anadin Extra before so I googled it. Are you in the UK? The sites that mention it seem to be sites within a UK domain. This is the info I got about Anadin Extra:
Anadin Extra Tablets can be used to treat mild or moderate pain stemming from a variety of causes, such as toothache, neuralgia, headache, migraine, period pain and sore throats. Anadin Extra Tablets consist of a triple action formula of caffeine, paracetamol and aspirin.
Paracetamol is apparently acetaminophen (Tylenol).
JK

REPLY
stimme | @stimme | May 15, 2020
In reply to @lioness "@stimme What is this med is it Anacin Extra ? I never heard of Anadin Extra..." + (show)
@lioness

@stimme What is this med is it Anacin Extra ? I never heard of Anadin Extra .

Jump to this post

I suspect you are in the US? I am in the UK. Anadin is a brand of painkiller sold in the UK and Ireland, launched in 1932, originally by American pharmaceutical company Anacin and currently by Pfizer. Anadin Extra – aspirin, paracetamol and caffeine based

Looks like you may be right!

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.