I'm Sherri. Waves to ya'll. I feel like I'm living in a deja vu world all over again. For 10 years I fought Endometriosis tooth and nail; and to be completely honest I never thought there could be another chronic illness equivalent to Endo until Fibromyalgia. I cannot recall when I first started having all over pain now that I try and think about it. Being shuffled around doctor to doctor seems to be normal for me. I'll start off with about a year ago it got to the point where I could not walk or close my hands. I'm 35 so struggling with walking should not be an issue. The fatigue part felt as if I had the flu.
After missing weeks at a time at my job my doctor told me it would be best for me to quit my job. So I did that this past November. This journey in regards to finding what helps, what doesn't etc is new to me. When I was struggling with Endo, I took to online support because friends and family could not comprehend the misery I was living. I had a total hysterectomy almost 10 years ago. My primary care doctor first said I had a virus and it was making me stiff, hurt etc. Then he told me I had myalgia. So we started Lyrica, made me shake and feel extremely jittery. Stopped that medication then tried Cymbalta; this one made my pupils so dilated that my children thought I was an alien. I have also tried Neurotin, Effexor and several other medications without success. For pain I currently take Norco and Flexril, they help mildly at best.
He has referred me to a Rheumatologist (which I'm not sure exactly what they are going to do for me), pain management doctor and a Neurologist I'm not sure how everyone elses pain feels but mine feels like fire running through my body. Often the pain is so intense I cry if I have the strength to produce tears.
I'm anxious and I don't want to say excited but in a way I am; to hear from others who are unfortunately going through the same pain as I am. Thanks for reading and I look forward to meeting ya'll more...
We are so glad that you found our online support group. We felt so relieved when we found it. We are growing every day with people who are so glad they have found this group.
We are so thankful to Ben and Scott who started this group. It's the best group I found in my research.
But each member who joins brings their own uniqueness and adds to the richness of support.
Don’t be hesitant about the rheumatologist. If you end up with a good one it will make all the difference. My pcp ran all the tests and said it was fibro and starting treating me for that but I didn’t improve. My rheumatologist ran the same tests and many more specific tests and found many more things that are beyond the scope of the pcp. Not that the pcp’s do anything wrong. The rhematologist is just much more specific. And the good thing is, my treatment is working. Not overnight but my good days are much better days and the bad days are bearable now and its only been a few weeks. I can see light at the end of the tunnel.
I’m glad you are being referred to specialist and I hope you find some relief.
Big welcome to you! I have to tell you that I never related my Endo at such a young age to anything, as a matter of fact, there was no such word then, but I had a total pan hysterectomy for my 23rd birthday. I found out I was predisposed to autoimmune genetically, but it was not in high gear until about 7-8 years ago, took about that long for a diagnosis. You will find many women here who are or have dealt with Endo.
I would say that the Doctors he is referring you to are the best ones to give you solid answers and hopefully substantial relief! The Rheum just told me that my fibro was most likely caused by the autoimmune arthritis!
Please be SURE you are familiar with ALL procedures of pain management before you get in there, as they are going to 'hard sell you' from their first breath! I think the Rheumatologist and Neurologist are good ideas, seeing the Rheum first would be my best thought! Their wisdom and solutions beat everyone's in my book!
I'm going to be giving you a link, be sure you really read it before going to pain management!
Here is a good link from NIH about endo and fibro!