Hello fellow fibrosisters: I'm desparate and frightened because the pain I'm having all over my body is practically umbearable and on the outside I look normal. People think I'm fine, but I am suffering so badly. I drag in to work every day and don't know how I'm going to keep up. Here is my history: I had a laparoscopic vaginal hysterectomy with both ovaries removed 9/29/03 for adenomyosis (internal endometriosis in the uterine muscle). Since the surgery I am on hormone replacement therapy using the Vivelle Dot (Estradiol) patch. I was having anxiety and took Paxil CR for a year and quit last year because I thought the sore throat I developed was due to to the Paxil. Turns out last year I was diagnosed by two ENT's with "LPR" which is acid reflux affecting the vocal cords and throat. I have severe redness and swelling above the vocal cords. I have been on Nexium 40 mg twice a day for the past year.
Last year I started to get real tired, with a "flu like" feeling most of the time. I'd get short of breath just climbing two flights of stairs at work.I went to a rheumatologist who ran all kinds of bloodwork and didn't come up with anything and didn't think it was fibro since I didn't have any "trigger points". Since this past March I began developing lower abdominal/bladder like pain. The urologist did a potassium instillation test and said I have interstitial cystitis. He scoped my bladder (not the hydrodistension, just a regular cystoscopy) and said it was normal except a severe elevated trigone. I started Elmiron three weeks ago to try. I thought maybe it was the Nexium causing the bladder pain so stopped it for ahwile but now my throat is killing me. I have brain fog, horrible pain all over, nausea, sore throat, lump in my throat, severe muscle and joint pain, twitching in my leg/groin/bladder area muscles, pain and burning sometimes when I urinate, lower abdominal pain, my left eye is always red, etc. and am in agony.
Does this sound like fibromyalgia to all of you? Lupus? Does anyone out there have reflux and/or "IC" with this? I was tested for Lymes three years ago in the ER and it came back negative. I just don't know where else to turn. What do you think all of this is? All bloodwork, CT of Abdomen x 2, urine C&S are negative. NOTHING shows up as a red flag. Should I see a pain specialist? Have a diagnostic lap? See a fibro specialist? Mornings are the worst waking up, the pain is unreal. Is this characteristic of fibromyalgia? Sorry for the whining but I can barely function anymore. Thanks to all who can share any insight. This board is wonderful.
Hi Suncat, Sorry for all that you've been thru! How awful. I am relatively new to fibro, only 2-3 months. But a lot of your symptoms are normal for fibro. I even have the red eye thing, muscle twitches, numbess and tingling,leg and feet pain, lower back and hip pain, can't sleep.
But you still need to rule out everything else. ALso the thyroid could cause a lot of these symptoms.
Welcome to theboard. Others may help more. I just wanted to say your not alone. It takes awhile to get a def dx. Hopefully it's something easier to fix!!!!
My wife suffers from FM as well. She was almost living at the rhumetologist and was about to start injections for the severe pain she was suffering from. She also suffers from BiPolar disorder. I did a lot of research and learned something very interesting; sufers of Fibromyalgia have very low glutathione/antioxidant levels. MY wife increased her gluthione levels with a whey protein product. Her FM has not been cured, but she sufferes from very little pain and her Depression has come under ocntrol as well.
Hi Suncat! Huggies are being sent to you with all sorts of healing thoughts, as well. I feel such compassion for all the suffering you are enduring.
Indeed, this sounds as though you may have FMS. The Interstitial Cystitis is a common symptom, and can accompany all sorts of maladies such as IBS, migraines, reflux, dry mouth/eyes, muscle twitching, sore throat/lump in throat, hypoglycemia, hypothyroidism,24-hour flu-like symptoms. You may have to go back to your rheumatologist and ask him/her to do a tenderpoint test to confirm FMS since there are no medical tests to confirm this syndrome. I had to tell my rheumy that I had FMS, and once I did he was able to confirm MY diagnosis. You may have to do the same thing with your doctor. Do not hesitate to move on to another physician if you are not getting the attention you deserve.
Another footnote, look into guafenesin therapy. You can find out about this therapy by reading "What Your Doctor May Not Tell You About Fibromyalgia", by Dr. St. Amand.
And not everyone who has fibro will pass the typical tender point test. I'm officially diagnoses, but have never had the "proper" number of tender points show up.
When everything else has been ruled out, as it sounds like with you, the only answer left is fibro. Not very encouraging, but that's really the only way to diagnose it right now. You may have to keep seeing doctors until you find someone who agrees with you. Not all doctors believe that it's real. Good luck!
Your note re interstitial cystitis caught my eye. I was diagnosed with endometriosis and had a hysterectomy about 6 yrs. ago (via laparoscopic). High anxiety put me on the Dot. Recently, I started experiencing lower abdominal pain/bladder, pelvic discomfort on right side, muscular aches & pain in legs and arms and recently sore throat. Also, I have a persistent need to urinate. (So I had 6 good yrs on the Dot! not bad)
The intersistitial cystitis symptoms seem to match what I'm experiencing and I'm beginning to realize (after a lot of research) that there's a long list of other symptoms and illnesses (including Fibromyalgia) that may come with post-endometriosis and hysterectomy. I'm sorry to say that unfortunately, a lot of us "endometriosis/hysterectomy" patients have much to endure and learn. The long list of symptoms/risks associated with the Dot have me concerned as well, but like every one else I had to choose between the kinder devil. It was the anxiety and night sweats or the hormones.
I feel like all I can do is see the doctor to confirm these symptoms/chronic burdens and take it from there. The one thing that helps me get through this is my streching and light exercise. Also, I read that certain diets aggrevate intersistitial cystitis: Vitamin C, caffeine, soda and chocolate. I do recall having a full day of all of the above - the pain was unbearable!
Thank you so much for your posting and sorry you are having so much pain. Hopefully, we can all find a better way to live with these post-illnesses or even eliminate them all together.