Scoliosis

[mag123ben]

Does anyone else have scoliosis and MPN jak2. I'm in so much shoulder pain and neck pain. Have tried a lot of pain killers, not very helpful. Wondered what other people took.

[hunter5582]

I do not have scoliosis along with the JAK2/PV but I do have spinal deterioration. I have experienced significant pain related to the issues with the spine. While the scoliosis and JAK2 mutation are not directly related conditions, there is a common theme of inflammation as an issue.

Directly treating the scoliosis would require consultation with a skilled spinal specialist. There are many treatment options for the various forms of scoliosis. Treatment depends on your specific form of scoliosis and other medical conditions.

Suggest that consultation with a pain specialist would also be a good idea. My daughter, who is also JAK2+ and has scoliosis has found that to be very helpful. There are other options to medications that can be effective. You would need expert guidance on those options.

It is worth noting that reducing systemic inflammation can be very helpful. The pain I experience from the spinal deterioration and osteoarthritis did not respond to NSAIDs or Lyrica. What has helped the most is curcumin. Curcumin makes a significant difference in my level of pain by reducing inflammation.

Specific to the back issues, I also experience significant relief from massage therapy. This reduces pain and increases level of functions. Note that it is very important to find a massage therapist who is skilled in therapeutic massage.

Wishing you success in finding solutions.

[Spanelmad]

I've only just been diagnosed with scoliosis(it's in my lower spine) ,the spine itself is degenerative and there's nerve damage. You haven't said what meds you are taking? But when using interferon joints were very inflamed and sore!! For help I use a heat pad and gentle movement.In the past I've had hydrotherapy which was also successful.Painkillers only use paracetamol and codeine alternating every 4 hours.You might find you need a inflammatory as well.

The other thing to say is get checked in case it's something else entirely!!

Hope you get some relief

[MWxxxx]

Hi, yes I am JAK2 with PV and have scoliosis. Mine is thoracic - a sharp kink and twist. It really does depend on the type in how you treat. I saw a really helpful osteopath who showed me some specific exercises to stretch the tight muscles around the kink - that was probably the most useful thing and has helped enormously. I also try lying flat on the floor for a few minutes a day and try and let my shoulders sink into the floor to compensate for the twist. You can also put a tennis ball or small massage ball behind your back or shoulder and stand against a wall - try rotating the ball by moving your back over those sore or tight muscles. For my neck pain I use those microwave heat pads and paracetamol (on aspirin so cannot take ibroprofen). Doctors seem to make light of scoliosis but it is so painful sometimes - I hope you find some suitable ways to manage it. Also if you are in the UK there are scolosis specific exercises on the NHS website.

[Gaithersburg]

I have been prescribed Versatis patches which I wear over night for 12 hours for neck and shoulder pain and they do help. Hope you find something which helps.