Okay. I would never do this. But when something works, it works.
I think you can tell how desperate my situation has been. Bedridden.
June recommended trying massage therapy, heat, and muscle relaxants for 2 weeks, before we do any scans, in case I strained a muscle and had spasms going on from overuse.
June was right.
But more unbelievable than the fact that muscle injury could have been causing my vast array of symptoms is the fact that I found a brand new massage therapist in a new city, and he gave me the most effective massage of my life. In the past, I've never had a massage with noticeable lasting results before. But this was a new kind of massage. He called it neuromuscular. It didn't hurt. It was very slow motion. I didn't know it could possibly help so much. When he told me the effects would be more noticeable and improving over the following 24, 48, and 72 hours, I smiled, but didn't really believe him. But I wanted to.
But then, he was right. It's only been 48 hours actually, but the pain in my upper back is drastically improved. And I believe that my crazy EDS muscles were pulling on my spine and irritating my nerves. Because other symptoms have improved too, especially the nausea.
I do have a migraine today. As soon as I see him again, I will ask if he can work more on my neck to try to help the migraine area more. But he has already given me such a huge gift.
So, I'd like to share his website with anyone who may be in the Milwaukee area...even for a day. Just go see him. I'd even travel from surrounding areas to see him if I didn't live here. His name is Stuart Blystone. From my experience, he knows what he's doing, and he can really help.
Here's Stuart's page:
http://www.milwaukee.massagetherapy.com/
I just wish that all of my Chiari/EDS/fusion friends could find a massage therapist like him.
Maybe one day I'll find a physical therapist that can be helpful like some of my friends have found.
But I'm certainly grateful for the help I've found. I'll let you know how it goes in the future.
(I am simply sharing my own experience, and this should not be seen as a substitute for medical advice. I'm also not getting paid anything to share this information with you. :))
Living with chronic illness - Mast Cell Activation Syndrome - Chemical Sensitivity - Chronic Intractable Migraine - Ehlers Danlos Syndrome - Dysautonomia - Chiari Malformation - Cranio-cervical Instability - Functional cranial settling - Cranio-Cervical Fusions - Retroflexed Odontoid - Occult Tethered Cord
Friday, August 12, 2011
Tuesday, August 9, 2011
Dear June
I sent a message to June last night. I think it summarizes my current concerns:
Hi June,
This is Carolyn Richardson. I'm writing with a problem. I'm not sure who to go to for help, but it seems that your and Dr. B's opinion would be the most helpful place to start in trying to figure out my current situation. I got married sixteen days ago. The wedding day was fabulous. I was able to stand a lot of the day and even dance for a couple hours in the evening, though we did sit during the ceremony. Not surprisingly, the first week after the wedding, I rested a lot to recover from the exhausting day.
One week after the wedding, my husband and I moved into a new apartment. This day, there was a lot of cleaning, packing, lifting, and moving into the new place. It was a very strenuous day. I rested a lot, and I didn't carry anything too heavy, but I tried to do my part in any way I could. Since moving day, I have become sicker and sicker, and I have now been completely bedbound for 5 days. I'm having troubled describing the symptoms to family, because they are not exactly like my usual symptoms. They are a little different. If I am not laying flat, I now get a headache and nausea again. But my worst problem is a severe, burning pain in my upper thoracic spine that is very difficult to alleviate without very specific positioning. It also comes with severe nausea. And I've lost my appetite almost completely. I have a sense that my spine is being compressed intensely, and that it makes me choke and gag, along with the pain in my thoracic spine, and later, the headache.
I don't want to get stuck in this whole bedbound thing again, as I had just been getting healthier and I've been exercising regularly. I had even just begun looking for work again. I am on the verge of beginning my new life, in a new state, with my new marriage, healthier than ever. But the move has crushed me.
What should I try at this point? The pain in my back is so intense, I can barely find a tolerable position to rest in. And I can't sit up for long, because the nausea overtakes me. I'm also just transitioning to a new insurance, so I haven't seen anyone locally yet, but I should be able to very soon.
Are there any scans I can have done, to check on my fusion, or on the spine (area between the shoulder blades)? I'm sure I could get my GP to rewrite them.
Do you have any thoughts on what these symptoms could be?
Thank you so much for your help.
Hi June,
This is Carolyn Richardson. I'm writing with a problem. I'm not sure who to go to for help, but it seems that your and Dr. B's opinion would be the most helpful place to start in trying to figure out my current situation. I got married sixteen days ago. The wedding day was fabulous. I was able to stand a lot of the day and even dance for a couple hours in the evening, though we did sit during the ceremony. Not surprisingly, the first week after the wedding, I rested a lot to recover from the exhausting day.
One week after the wedding, my husband and I moved into a new apartment. This day, there was a lot of cleaning, packing, lifting, and moving into the new place. It was a very strenuous day. I rested a lot, and I didn't carry anything too heavy, but I tried to do my part in any way I could. Since moving day, I have become sicker and sicker, and I have now been completely bedbound for 5 days. I'm having troubled describing the symptoms to family, because they are not exactly like my usual symptoms. They are a little different. If I am not laying flat, I now get a headache and nausea again. But my worst problem is a severe, burning pain in my upper thoracic spine that is very difficult to alleviate without very specific positioning. It also comes with severe nausea. And I've lost my appetite almost completely. I have a sense that my spine is being compressed intensely, and that it makes me choke and gag, along with the pain in my thoracic spine, and later, the headache.
I don't want to get stuck in this whole bedbound thing again, as I had just been getting healthier and I've been exercising regularly. I had even just begun looking for work again. I am on the verge of beginning my new life, in a new state, with my new marriage, healthier than ever. But the move has crushed me.
What should I try at this point? The pain in my back is so intense, I can barely find a tolerable position to rest in. And I can't sit up for long, because the nausea overtakes me. I'm also just transitioning to a new insurance, so I haven't seen anyone locally yet, but I should be able to very soon.
Are there any scans I can have done, to check on my fusion, or on the spine (area between the shoulder blades)? I'm sure I could get my GP to rewrite them.
Do you have any thoughts on what these symptoms could be?
Thank you so much for your help.
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