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Diagnostic Limbo
2 Replies
seedbeads - January 22

Hi there, I'm new. Been reading through these forums and finding a startling amount of information that I can totally relate to.

So far I haven't been diagnosed but my doc is going down the FMS path now. I've seen a rheumatologist (who, honestly, was somewhat incompetent), ob/gyn, and gastroenterologist about the problems. The GI is great, he's got me set up for motility and pH tests to figure out the stomach part (oh, got a hiatal hernia too). ob/gyn was no help because I can't take the Pill, which was her only solution. I didn't trust the rheumy so I asked my doc for a second opinion, since the rheumy was a sports injury/OA specialist anyway. He's getting me a referral to a doc that specializes in tissue pain for a second opinion. Currently he's got me on Flexeril and Ativan as needed, and Motilium before every meal and before bed. I also take Zantac 150 once or twice a day.

Anyway, I can relate to a lot of what's going on here. I get aches and sharp pains all over the place, seemingly randomly. My doc is having me keep a pain diary; I hope I can stick with it. I've got the horrible insomnia/crippling fatigue combo, TMJ problems, costochondritis, headaches, seemingly constant back pain, IBS-like pain, terrible PMS, anxiety... there's probably more but I can't remember. Yeah I'm a bundle of medical fun. All of this started a few years back, and got worse after I had my appendix removed. I've had endless bloodwork, x-rays, ultrasounds, and a bone scan, and everything is clear. There's not much I can do for pain management beyond Tylenol. NSAIDS are too hard on my stomach, and narcotics make my heart race. Even morphine just makes pain worse for me (found that out in the recovery room). Sometimes I take Gravol (Dramamine) or Benadryl just to sleep. I can't eat dairy products, even though the skin prick and lactose tests were clear. I'm sure there's other things I shouldn't be eating, but I haven't figured them out - potatoes make me pretty miserable, and I can't handle more than one glass of wine, and sugary pop is out of the question.

Anyway, I think it's apparent why we're now leaning towards FMS. I'm learning a lot from reading this forum, and I hope I can find some support here as I go through the process of finding an answer.


January - January 22

Hi seedbeads, I'm new too, but have had fibro for decades.

You have to do your own research and be proactive. I try to use natural methods because the drugs have bad side effects. I like the peoplespharmacy site. Doctors can give you a run-around. Speak up when meds don't work and try others. I've come to an uneasy truce with my fibro with diet, supplements and meds of my choosing. I picked the ones that have the fewest side effects for me. (I found that some of the potent new meds made me sicker.)

Fibro sucks. This forum is great. Isn't it nice to know you're not crazy? :P

Good luck with your journey. You can manage this.


Stacey373 - January 22

Hi seedbeads - the one thing that got my attention in what you wrote was that you have horrible PMS and periods? I've dealt with that for MANY years and I have tried every form of birth control out there. for some reason, my body is way too sensitive to even the smallest amount of hormones.

BUT...I finally found a solution to that! I started using Progesterone Cream just a few days each month during my period and it works GREAT! You can find this cream at any pharmacy and you don't have to have a prescription for it. You just rub a small amount on the insides of your elbows or behind your knees and you can control the amount of hormones going into your body (compared to having to take a pill every day).

The biggest thing I've noticed with using this cream is that I usually am guaranteed to get a headache every month and since I started using this stuff, I don't get a headache any more when I'm on my period. It's AMAZING! lol Even if I forget to use it at first and I get a headache....once I use it, by the next day my headache is gone. It also helps with the cramping and other PMS stuff.

I suggest you talk to your doctor about this and then go buy this cream ASAP! Hope this helps you, Stacey :o)



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