KEY THINGS I HAVE LEARNED:Attitude, attitude and do all you can for self-management. I mean ALL. GO TO PHYSICAL THERAPY ASAP. Learn stretches that will help. As the writer above said, water therapy is very beneficial. Many P.T. places have it, as do larger hospital P.T. programs. If you have insurance for P.T. use it! Learn what to do for stretching, and critically important: build up all your core muscles (including arms, back, stomach,) learn how to have good posture and build the muscles needed to do it and maintain it. This tear a lot of burden OFF your neck if other muscles are doing their jobs. You cannot afford to be overweight or out of shape. You will not like the exercise and stretching at first, none of us do, it hurts.That comes with OA, and in P.T. they taught me to call it the "good hurt" as it does a LOT to prevent worse pain. There is NO nice way to say that; you cannot afford to be overweight and to not stretch and exercise consistently. If you have OA in your neck you are likely to get it elsewhere. And do not overlook attitude: I am in tremendous pain around the clock. I do not have the luxury of round-the-clock pain medicine; it worsens the dystonia, a LOT. That means at night, no pain meds, and the medications for sleep/pain, like Trazadone are contraindicated in Dystonia. So many medications that could help worsen Dystonia. So I have to rely on the power of my mind. You would be amazed what it can do! Yes, I have the horrible disease of Dystonia that someone else caused. I got out of the marriage and truly learned what forgiveness is. Otherwise anger and bitterness keep me ill.... Do not be too proud or too afraid to see a pain management psychologist (as a psychologist myself I am biased in recommending a psychologist over a counselor due to the level of training in physiology, research, brain/neurology etc. that psychologists have that counselors don't). Look into biofeedback, listen to relaxation tapes (tremendous good stuff on self-hypnosis by Wendi.com), MAKE yourself stop noticing the pain, thinking about it, and talking about it. You can train you brain to do this. I can tell you I literally would not be alive if I could not, and did not, do these things. Next week I meet with the brain surgeon to see if I am a candidate for DBS (Deep Brain Stimulation) surgery. I get 400 units of botox in my neck, shoulders and upper back and it helps... but the Dystonia is ripping my body apart and coupled with a lot of arthritis I am rapidly moving from partially disabled to soon looking at totally disabled if I am not able to get DBS and get the Dystonia under control.... then I'll be a candidate for surgery on my thumbs! Right now I am not, as I rip apart surgical repairs. And yes, arthritis comes back after surgery.
OA is horrible, plain and simple. But do everything YOU can, and I think you may not have yet tapped into the amazing powers we have I hope it isn't too late and you get this post. I put a lot of time into it for you because I really want you to have a better life. I really do believe you can. I hope to hear from you on here!View Thread
Great Advice: The Dr. who finally referred to a movement disorders clinic said, "If you want the best care, the most current research driven information, go to a teaching university." Typically you are seen by more than 1 Dr. as that is where residents and "Fellows" are working (after their residency the best of the best go on to do "Fellowships"). Invariably, a couple doctors looking at you and discussing it is better than one. I am not a doctor, but I have learned a LOT on this journey. I am now partially disabled as I bad have arthritis in my thumbs, with the extra bonus of a bone spur, degeneration in my wrist joints, arthritis throughout my cervical and thoracic spine (various types, but fortunately non that are the inflammatory type!). Bunions are in the family of arthritis issues and now I have bursitis in one. I have worn my wrist joints out due to the extreme torsion "flexing, have had 1 carpel tunnel surgery (the other we are postponing as long as possible as I learned the numbness, as long as not severe, serves to hide the pain). What I was told about the popping sound is that it is like when a person "pops" their knuckles or "cracks" their back. Also, it is important to remember, it sounds so much louder to you because it is right next to your eardrum!I know, because this happens to me all the time too, and it is a very unsettling sound, magnified if it is in your neck by being so close to your eardrum. That is not to say other around you can't hear it too. We can all hear that sound when someone else cracks their knuckles! I went to good ol' Wikipedia to get easy to understand explanations for you. It is almost always one of these: 1) the sound made from the snapping of tendons or (scar tissue) over a "prominence" (such as you would have would arthritis) that can generate a loud snapping or popping sound. 2)Cavitation within the joint—small cavities of partial vacuum form in the fluid and then rapidly collapse, producing a sharp sound. This explains the popping that can occur in any joint, such as during spinal manipulation . or cracking one's knuckles. Synovial fluid cavitation is the most likely theory and substantial evidence exists in support of it.[2> or 3 ) crepitus: The sound can be created when two rough surfaces in the human body come into contact—for example,in osteoarthritis or rheumatoid arthritis when the cartilage around joints has eroded away and the joint ends grind against one another. My son just graduated medical school and explained this to me as well, giving me all the time I wanted, which we don't always get at the doctor's appointments. He, and the doctors I see, are clear that it is not harmful. It happens to people who have no physical problems, and research has shown that people who crack their knuckles are not "causing arthritis" or wearing out their joints. It is going to be more common if you have an issue like arthritis in your neck. It may be the sound of bone on bone, which is what happens with arthritis and/or the tendons creating that popping sound as they move over an area with arthritic growth. There can be arthritis where the joints (discs) wear away. There can also be bony growth,. When I read the scan reports on my spine I see words such as spondylosis,osteophytic spurring, osteophytic ridging and fact joint hypertrophic arthopathy, Be careful on the word "spondylosis" it is NOT the same as Ankylosing spondylitis. That is in the family of RA and blood tests are used to rule that in/out. If you had indications of an inflammatory arthritis it would have shown up in your exams and you would be on a completely different path, one you want to be grateful you don't have! more in next, and last post....!View Thread
hello alliej0225, I hope you will get this as I can see I am late in joining this discussion. I have arthritis in my neck and spine, several types. If you can bear with me and read on I think I have learned a lot over the years of this journey with this body of mine. I hope some of it will be of help to you. I also have arthritis in both thumbs, my small finger, bunions, that I had as a child, have returned, though not as bad. Trust me, I have never in my life worn heels or shoes that bind. It is heriditary. I had steroid injections in the balls of my feet for years as a child (*owie*) until I had surgery on both as a young teen (and structural corrective foot surgery as well). Both bunions eventually came back, though not as bad, and now I have a bunion on the outside of my foot with bursitis. That little thing can manage to scream pain, that drowns out the rest of the pain I have! I am done with my "limit of 3" injections and will have to have surgery on that one... while I have my hands and wrists in semi flexible braces during the day and hard "half-casts" at night. I also have some encapsulation in both shoulders.(~ really? and how am I supposed to get around, go to the toilet, etc. after the bunion surgery when I have minimal use of hands and arms? *sigh). And to create "the perfect storm" I also have a movement disorder called dystonia. It is in the family of involuntary movement disorders like Parkinson's, but fairly different and much less common. I have both general dystonia, which causes major muscles to pull and stay in that overly tense pulled position; i.e. I had no scoliosis 2 years ago and now have 2 curves in my lower back, one mild, one moderate. Worse, much worse is that I have torsion dystonia; again it is an involuntary muscle movement. It began in my neck. I had the genetics and a trauma to the neck/back of my head (called "domestic violence") set it off... So I literally pull my neck in all varieties of positions, AS HARD AS I CAN, causing excruciating pain, AND DAMAGE, then do it again and again. More pain = more stress and it only drives the dystonia, and the repetitive torsion pulling UP. Add arthritis to the mix and it is "the perfect storm". I went 12 years with the dystonia undiagnosed and a lot of damage was done to my neck in particular during that time. During that undiagnosed time my neurosurgeon ONLY focused on the spinal damage, not the fact of my movement disorder, which I could only then describe. He did clean up some arthritis in my neck when he fused the cervical area (don't be in a rush to do fuse...) After eventually pulling the fusion hardware out from the dystonia :O I had it refused, and more extensive fusing into the thoracic region. And what do you know... that arthritis grows back. It was again cleaned up during the 2nd surgery and scans show it continues its march on, growing bone spurs, fusing one of the vertebra..... I am now under the care of excellent doctors at a movement disorders clinic at a major teaching university.