Scoliosis: In pain morning noon and night

@meandyou I am so sorry. I have neuropathy and I do know what constant pain feels like. Can you get medical marijuana in your state? It does help distance or take away the pain..... Lori Renee

@meandyou Hello and welcome to Connect. Your situation sounds quite challenging and I'm sorry to hear about it. Do you have a plan at this point? Lori Renee's suggestion @lorirenee1 is a great one. I also use medical marijuana for my chronic pain. I hope it's legal in your state and you can explore the option. This forum is a wonderful place to find answers, suggestions and support. Keep connected. Be well.
Rachel

I have scoliosis (also Spinal Stenosis) and I know what you mean, especially as I am a violinist. However, I use different strategies. I often find that repeating the same strategy doesn't always work. I use Paracetamol (apparently one shouldn't take Ibuprofen with coronavirus around - it exacerbates it). I have a Microdoctor (like a Tens machine). I have Bowen therapy, Acupuncture or Osteopathy and they all help. There are exercises online too.

Here is a chiropracter who demonstrates how much actual improvement is possible depending upon the angle of your scoliosis which I personally found convincing.

Best wishes,
Roger

Try Diclofenac Sodium Topical Gel 1%. I now can get a full night sleep for the first time in 3 years.

Dear @meandyou. My heart goes out to you. Have you seen a surgeon? I'm having a fusion done because of degeneration in my low back which caused scolosis, but stenosis in my L-4 &5 and S!. The surgery starts at my t-10 and goes to my pelvis. Its a big surgery. Are you able to get to one of the Mayo Clinics. I don't know where you live. I go to the Mayo Clinic in Rochester. Oh, how I wish there was something I could do for you, because I live in a lot of pain too and can't take pain pills because the surgeon told me if I did what he gave me for pain would not work as well. I see above that other people had good replies. Bless you.

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 !

@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.

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

@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.

@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