Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Dear Curtis ~ I have been lucky enough (?) to find a doctor that had even heard of RSD much less treat for it in relatively short time. I only had to suffer the pain and disappointment of doctors, emergency rooms, and family thinking I was just not wanting to participate in life as a whole, that I didn't want to work etc etc etc. ........they couldn't have been farther from wrong. My back pain was real and I wasn't imagining it. Now comes the part where we start trying stuff in hopes that something will work. i have had three caudal EPSI's (spinal injections of steroids) the first giving 4 really great days with a pain level of only 2/3. the second 2 gave little relief and the symptoms that they did help with seemed to allow other symptoms come to light and to be honest - the previous symptoms were easier to bear! I have pretty much resigned myself to the fact that a 5 is about where my good days are on the pain scale and it only goes up from there. I have a 2 year old daughter at home, how can I not bend, carry, hold, etc etc? I can't follow the directions exactly, but I do try not to over do. I take a handful of meds for this and that. It's frustrating and tiring, wish I could sleep! I am on Tramadol for pain and on a 5 day, it doesn't give much relief and on days that it is higher than that - I am absolutly useless!! I am glad that you found someone who will take an active role in getting you the help that you so richly deserve after all these years!! Welcome to the " your not crazy " club and we all hope that we can be of help to you! " Ever searching for that pain free day...................together " ~Tammy Curtis wrote: My name is Curtis. I was diagnosed with Fibromyalgia / Chronic Pain Syndrome in 1994-1995 Many doctors told me the pain was all in my head. Some looked at me like I was an addict shopping for opioids. None could find a cause for my pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Hello Curtis, I also have Fibro as well as Advanced Degenerative Joint Disease. It's unfortunate that you wasted so much of your time being in pain because a doctor didn't diagnose you properly. As for the Fibro, I was the one who needed convincing by my doctor. When I first was told I had it by the Doctor I was seeing then I was sure it was some kind of 'flavor of the month pseudo disease' thing and refused to believe it. It took several years for me to accept the diagnosis and allow the doctor to prescribe adequate pain medication. We need good communication and trust between us and our doctors. I still have some trust issues because of dealings with a couple of bad doctors but, I am working on it. Welcome to the group. I look forward to hearing about the outcome of your new treatment. Curtis wrote: My name is Curtis. I was diagnosed with Fibromyalgia / Chronic Pain Syndrome in 1994-1995 Many doctors told me the pain was all in my head. Some looked at me like I was an addict shopping for opioids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 I am so glad they finally figured out what was wrong! I had a tumor for about 10 years before they finally figured it out. I understand completely the frustration. Welcome! Gwen in Kansas Curtis wrote: My name is Curtis. I was diagnosed with Fibromyalgia / Chronic Pain Syndrome in 1994-1995 Many doctors told me the pain was all in my head. Some looked at me like I was an addict shopping for opioids. None could find a cause for my pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 Hi Curtis, Thanks for that. I agree with you. I am glad you have a clearer diagnosis now. I hope that leads to better care. Uabi Curtis wrote: > I DO BELIEVE in Fibromyalgia / Chronic Pain > Syndrome. But I feel that doctors are too quick > to label a person as having it, as an excuse to > quit digging deeper for another cause. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Hi All, I have been reading the group for a few weeks and decided that it's time to introduce myself. My name is but a lot of people use my nick name Tink, so feel free to do so as well. I just moved to the Pacific North West from Europe, this is our second assignment in the US and we are planning to stay at leat 7 - 8 years if not longer. We have no children, but do have 2 dogs. I am diagnosed with Lupus, FMS/MPS. Arthritis, and Thoracic Outlet Syndrome. Thoracic Outlet Syndrome I have is because I have as a freak of nature a set of extra neck ribs, which causes the blood vessels, the muscles and nerves in my shoulder to squeezed down. Doctors often can't find a pulse in my right arm and neck and if I didn't tell that I have Thoracic Outlet Syndrome, they look at me very confused. If I'm in an evil mood I'd love to see them struggle to find an explanation. She should be death, there's no pulse, what's going on??? ;-) Of course it's the cause of a lot of pain and it's disabling me. I'm declared 100% disabled by my home country government and receive a disability pension/benefit. I haven't been able to work for a long time and I miss it terribly. I was a graphic designer with a home office and it enriched my life and was at the same time an outlet for my creativity. When I'm in a flare I have no creativity at all but am all focused on surviving and getting through the day. ;-) This list is a wonderful source of support and I hope to get to know you all better and hope I can offer some support as well. I'm now looking to build up a new relationship with a new doctor and it will be a challenge to find one who is compassionate and understands chronic pain and it willing to medicate. Is anyone of you located in North Oregon who can give me some tips of a good dr.? -- aka Tink Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Hi Tink, and all, Welcome back to the US and the West Coast! Tink, I grew up in the Pacific Northwest, Oregon coast in particular, and I would recommend you attempt to find a Dr. in the Portland area. It may mean a drive, but from my own experience, this may be your best bet. Please feel free to email me personally. Kris Tink wrote: I just moved to the Pacific North West from Europe, this is our second assignment in the US and we are planning to stay at leat 7 - 8 years if not longer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 Not sure where you are in PacNW Tink, but there are 2 great dr. in the Eugene area. Email me privatley if you're interested. Jami in OR Quote Link to comment Share on other sites More sharing options...
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