Chronic Pain members - Welcome, please introduce yourself

@JustinMcClanahan I have had the medical community document Fibromyalgia as FMS, Fibromyalgia Syndrome. I'd like to hear from @christinek to see if she is referring to this acronym.

Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It also has spread to other parts of my body including internal systems. In fact, I visit my GI doctor tomorrow and though she has heard of CRPS, she has never heard of it affecting the body's sphincters so she probably won't be able to treat this very well. The orthopedic surgeon who messed up at the front of this told me that "pain is perception" while the plate he inserted was slicing my peroneal tendons. Try to find a pain doctor with experience of RSD/CRPS. Mine is very supportive. It is scary, but somehow it is necessary to lift up oneself and look for the good things that do exist though it can be extremely difficult to see through the pain and uncertainty. In terms of research, you have probably found that this is an area where much needs to be done and it feels like nothing is happening. I am in the process of participating in a longitudinal study of folks with RSD/CRPS. I have found that this site helps because those who are on it don't need any explanations and truly get it. Be strong.

Hello @charwill234, welcome to Connect. I am sorry to hear your desperation that you are feeling with pain in regards to your Chronic Pain. You have come to the right place to meet other members who have experienced things quite similar to yourself. Sometimes just Connecting with others can help. You will find many of the members on this site have advocated strongly with remaining strong and active to seek out medical professionals who will address your concerns.

Charlton, here is a conversation you may want to check out: After knee replacement I developed severe RSD, http://mayocl.in/2cX10nN

You will find other members in an active discussion regarding their RSD/CRPS diagnosis, symptoms, and treatments.

I have trouble with dysphagia, and wonder if there's a discussion group going where I can learn more than the little the doctor has told me.

@jimhd, my search for other members didn't turn up any recent conversations on dysphagia, but I'll keep digging. In the meantime, I reccomend starting a new discussion in the Digestive Health group here, http://mayocl.in/292wLFY.

By creating a new discussion in the Digestive Health group, we may be able to create a new central location for members to share his or her dysphagia experiences.

@janetdh
This is @kathyvienna. It was interesting reading your postings about your CRPS. I developed CRPS in 2008 after I had back surgery. It started in my right foot and has gone up my rt. leg. I haven't found anything except oxycontin, cymbalta, lyrics, alive. My pain dr. has discussed the possibility of putting in a pain pump with fentanyl. Have you ever heard of that. There doesn't appear to be much out there. So discouraging.
Kathy

Hi my name is Jen,
My primary problem right now is fibromyalgia, although I have many broken bones from accidents that required multiple surgeries. Those I've been have left me in severe chronic pain, and I've been told started the fibromyalgia. Just from a bad break of my humorous, I had five surgeries. But all of the trauma has now caused the fibromyalgia and all the symptoms that go along with it. The worst of it being daily severe headaches and pain between my ribs that feel like I have a knife stuck there, I've been told it's one particular trigger point bothering me there and at the base of my head is another one..
I still have a hard time believing I have something called fibromyalgia, that causes so much pain, has taken away so much of my life, and it just feels like there is very little relief from it. I get offers for work actually quite a lot, and I can't accept. I've tried four times to go back to work. The initial shoulder break that started this snowball rolling downhill, makes work too painful. I cannot do my work because the pain in my neck and shoulder are so bad I cannot sit at a computer.

I used to be a skier. horseback rider, loved water sports, dancing, ballet, tennis and many other things. Now I crochet, watch TV, read and if I'm lucky I go out with my friends for lunch, I have a few awesome friends who bring lunch to my house for me.

I would love to find a Clinic that had a team of doctors that could look me over top to bottom, make sure that this is fibromyalgia and maybe possibly something with it additional. I'd like them to see if there were other reasons for what's going on because my doctors here seem bewildered. They can treat the symptoms a little bit, with some terrible flareups I don't know what to do. I love a place that could give me some answers. I've even been to one of our large medical centers out in Los Angeles, but they didn't treat you in rheumatology unless you had very specific symptoms. They then outsourced me to another rheumatologist that didn't really seem anything different than the rest. I may not sound like it here, but I'm usually a very upbeat happy person. I think I'm just very frustrated because I feel like I've had my lifestyle stolen within that time frame of two years. I think some of the symptoms were coming on before that,mostly the headaches, but I didn't know what they were.

I live in California, I've lived in many different parts of it, there's one area I'd love to move back to where my son and daughter-in-law live but I'm too sick to make the move, maybe someday.

I can tell you, I relate to all the things I've heard from everyone here. It's really good to hear that I am not the only one but I hate seeing you suffer like I feel like I do. I was a caregiver, and the worst part is now I have to be taken care of. I've been told that that's a gift to allow others to help you if I let it be, I'm working on that.
Anyway, it's nice to meet you all, Jen

Oxycodone is the only thing that takes the pain away from my right ankle. Unfortunately, I would agree. The medical community has limited options in terms of treatment as well as understanding how CRPS progresses as it is unique to each individual. Very frustrating and depressing knowing it is affecting more areas of my body and not knowing what will happen next. A friend of mine found a site that has some good info--The Princess in the Tower. Think it is out of England. To help make some kind of meaning out of what has happened to me I try to advocate on the challenges of having chronic pain and CRPS. All the best to you on your own journey!

Jen, the Bible says that it's more blessed to give than to receive, and it took me a long time to understand that I was robbing others of a blessing when I didn't want to take what was offered. It's hard to be a receiver after a lifetime of being a giver. Of course, we can abuse that and turn to feeling entitled. Not likely to happen to true, unselfish givers.

Jim

I've been diagnosed with Achalasia (throat) and keep hoping to hear from others. I personally must swallow with my head extreme left to have food reach my stomach (best way). I must concentrate every time I eat or drink to do this. Not easy if there is ANY distraction.
I've lost a lot of weight and now weigh daily to try to keep it level. Anyone with this problem??? Nanc