Scoliosis: In pain morning noon and night

Posted by meandyou @meandyou, Apr 1 4:57am

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!😪

@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
@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
@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
@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

Liked by marye2

REPLY
@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
@stimme

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!

Jump to this post

I @stimme I thought they maybe similar . Im in the USA Have a good day

REPLY

Hi, Lioness, thanks. You too and try not to listen to too many Trump statements. I'm sure it's not good for the health!

REPLY
@nancyguy

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.

Jump to this post

@nancyguy Thank you and the same to you. It sounds like you are getting good help. God's Blessing to you too. Jeanie

REPLY
@stimme

Hi, Lioness, thanks. You too and try not to listen to too many Trump statements. I'm sure it's not good for the health!

Jump to this post

@stimme You are so right . I only put on around 6 He is just to full of himself .

REPLY

I came by scoliosis late in life as the result of cancer surgery. I have an intrathecal pain pump. It's a small pump surgically placed in my tummy with a catheter running up my spine. It leaks about 4 mg of narcotics directly into my spinal fluid over 24 hours. I can also take another milligram of Narcotics in 10 doses over 24 hours by means of a remote control. Narcotics delivered in this fashion are one two three hundred times more effective than drugs that you swallow and have to run through your digestive system.

I don't know if your insurance will pay for this but it is the ultimate solution for this kind of pain that's just unrelenting. The volume of narcotics is so small there are no side effects, no constipation, no drowsiness. Search under my handle, wshh66, I have written extensively about my experience with the pain pump and my experience with pain clinics. I was treated and mistreated for 20 years plus by a series of doctors who were willing to treat me and a lot more doctors who are not willing to treat me. I was accused of being a drug addict, I was treated like a criminal and I was made to feel guilty for being in pain. I became a patient of the pain clinic at the University of Minnesota. There was a process I had to go through. I had to talk to a psychiatrist I had to talk to a psychologist, a neuropathologist and a palliative care doctor. Once I cleared those hurdles I was given very large doses of Narcotics. The side effects were tough and the relief was not complete. When I had cancer I had chronic pneumonia and a lot of infections so I had to wait for one year to pass infection free before they would give me the pain pump. I've had it now for more than 3 years and have the best quality of life I've had in the last 25 years.

I would encourage you to read up on the intrathecal pump and see if you think it might be right for you. If you can find someone who will put it in for you, it's much safer than pills and you cannot overdose, you cannot get high, and you cannot give your drugs away. I hope you find an answer love and blessings.

I should explain that originally I had pain all over my body but mostly on my right side due to pinched nerves. When I had my cancer surgery they remove so many lymph nodes that I got a thing called dropped foot. All of a sudden my left leg was an inch longer than my right leg and it was causing me to fall down but after that ended basically the extra leg hammered the spine to bend out to the right which fixed the sciatica I had but created it even worse on the left side.

Liked by lorirenee1

REPLY

Do get referral to PT. It is amazing what they have for these things now. Lots of the pain is referred from tight, weak muscles surrounding the area. It is not a cure, but consistent use of the stretches helps immensely. I am on no opioids and pain managed – Etodolac, plaquenil. See if you can find a Rocabado trained PT.

REPLY
@wsh66

I came by scoliosis late in life as the result of cancer surgery. I have an intrathecal pain pump. It's a small pump surgically placed in my tummy with a catheter running up my spine. It leaks about 4 mg of narcotics directly into my spinal fluid over 24 hours. I can also take another milligram of Narcotics in 10 doses over 24 hours by means of a remote control. Narcotics delivered in this fashion are one two three hundred times more effective than drugs that you swallow and have to run through your digestive system.

I don't know if your insurance will pay for this but it is the ultimate solution for this kind of pain that's just unrelenting. The volume of narcotics is so small there are no side effects, no constipation, no drowsiness. Search under my handle, wshh66, I have written extensively about my experience with the pain pump and my experience with pain clinics. I was treated and mistreated for 20 years plus by a series of doctors who were willing to treat me and a lot more doctors who are not willing to treat me. I was accused of being a drug addict, I was treated like a criminal and I was made to feel guilty for being in pain. I became a patient of the pain clinic at the University of Minnesota. There was a process I had to go through. I had to talk to a psychiatrist I had to talk to a psychologist, a neuropathologist and a palliative care doctor. Once I cleared those hurdles I was given very large doses of Narcotics. The side effects were tough and the relief was not complete. When I had cancer I had chronic pneumonia and a lot of infections so I had to wait for one year to pass infection free before they would give me the pain pump. I've had it now for more than 3 years and have the best quality of life I've had in the last 25 years.

I would encourage you to read up on the intrathecal pump and see if you think it might be right for you. If you can find someone who will put it in for you, it's much safer than pills and you cannot overdose, you cannot get high, and you cannot give your drugs away. I hope you find an answer love and blessings.

I should explain that originally I had pain all over my body but mostly on my right side due to pinched nerves. When I had my cancer surgery they remove so many lymph nodes that I got a thing called dropped foot. All of a sudden my left leg was an inch longer than my right leg and it was causing me to fall down but after that ended basically the extra leg hammered the spine to bend out to the right which fixed the sciatica I had but created it even worse on the left side.

Jump to this post

So, also get a referral to PT so you keep muscles strong. May be able to improve dropped foot, and relieve other weaknesses. I have MCTD, so the complementary effect to pain meds is great.

REPLY

I have a couple of PT's I just love. What is MCTD? Thanks

REPLY
@wsh66

I have a couple of PT's I just love. What is MCTD? Thanks

Jump to this post

MCTD is Mixed Connective Tissue Disease. It has many of the symptoms of Lupus. Rare disease, have had it about 24 years. Mostly soft tissue – tendons, muscle etc. It is diagnosed with blood work. Those who amend their diet to non-processed and exercise seem to do better. mctdfoundation.org

REPLY
Please login or register to post a reply.