Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I need help figuring out what's wrong with me. I know everyone is different but advice would still be helpful.
I have CFS and fibro. The fatigue has always been bad but the pain, hardly there. I used to have bad fatigue days where it would last a few days then I would feel somewhat better.
The past 2 weeks have been awful. I've been in pain and it moves around. It comes and goes but it's here more often then not. My fatigue is different then before. Before, when it was bad, I had no ounce of energy. It took a lot to even take care of the kids. Now, I feel exhausted but my energy level is okay, not the best but definitely not like before.
I've had mild cramping (like menstrual cramps) off and on as well. My BMs are different but not concerning. The cramping usually does not coincide with having to go to the bathroom, nor am I really gassy. I'm sorry if this is too much info but I really need help. I went to the dr. last week and he thought it might be IBS, a virus, lactose intolerance, or Celiac's. But I'm already gluten free so I don't think it's Celiac's although I've only been gluten free for about a month. If it's a virus, it sure is taking it's time leaving. I don't think it's lactose but then who knows. If it's IBS, he wanted me to try a probiotic or yogurt to see if it helps. I haven't tried it yet because they are expensive and I wanted to see if I got better just in case it was the virus. So I guess I'll go for the probiotic or yogurt to see if it helps, then try and stop dairy, then go from there.
Anyway, my questions is: if it's not IBS, do you think everything is fibro related and I'm going through a flare? If it's IBS, do you think the pain everywhere and fatigue is from the IBS cause the fibro to flare? Basically, am I going through a flare or something else?
I'm so confused and I just know something is wrong. Maybe not horrible wrong, but I just don't feel well. I would go back to the dr. but I don't have insurance so I need do what I can at home before I go back and rack up my bill.
Does any of this make sense at all?
I have CFS and fibro. The fatigue has always been bad but the pain, hardly there. I used to have bad fatigue days where it would last a few days then I would feel somewhat better.
The past 2 weeks have been awful. I've been in pain and it moves around. It comes and goes but it's here more often then not. My fatigue is different then before. Before, when it was bad, I had no ounce of energy. It took a lot to even take care of the kids. Now, I feel exhausted but my energy level is okay, not the best but definitely not like before.
I've had mild cramping (like menstrual cramps) off and on as well. My BMs are different but not concerning. The cramping usually does not coincide with having to go to the bathroom, nor am I really gassy. I'm sorry if this is too much info but I really need help. I went to the dr. last week and he thought it might be IBS, a virus, lactose intolerance, or Celiac's. But I'm already gluten free so I don't think it's Celiac's although I've only been gluten free for about a month. If it's a virus, it sure is taking it's time leaving. I don't think it's lactose but then who knows. If it's IBS, he wanted me to try a probiotic or yogurt to see if it helps. I haven't tried it yet because they are expensive and I wanted to see if I got better just in case it was the virus. So I guess I'll go for the probiotic or yogurt to see if it helps, then try and stop dairy, then go from there.
Anyway, my questions is: if it's not IBS, do you think everything is fibro related and I'm going through a flare? If it's IBS, do you think the pain everywhere and fatigue is from the IBS cause the fibro to flare? Basically, am I going through a flare or something else?
I'm so confused and I just know something is wrong. Maybe not horrible wrong, but I just don't feel well. I would go back to the dr. but I don't have insurance so I need do what I can at home before I go back and rack up my bill.
Does any of this make sense at all?
Also, I'm not pregnant. Just thought I would throw that in there! :o)
Do you still have your female parts? I had alot of cramping when I had endometriosis and ovarian cysts. The pain was widespread and would move around-referred pain. The problem was on one side but it would hurt on the other.
Did they do an x-ray or ultrasound on your stomach?
My son had issues with what I think was a virus that lasted a couple months.
It could be so many things.
Good Luck, I Hope You Feel Better Soon!
I was tested by a functional medicine doc 2 years ago when she suspected I had fibro and cfs, and in my case I guess they call it cfids due to immune dysfunction as well. Anyway, she diagnosed it after I tested positive for having Eppstein Barr (mono), CMG Virus, and HHV6 all in a dormant stage but had them active within the 18 months prior; eppstein barr showed acute and chronic.
These are 3/4 virus I understood to be common with CFIDS. Maybe you should be tested? Turns out the CMV virus became active after an exhausting sailing trip & car accident. I was so nauseated, I couldn't eat for a month and lost 20 lbs.
I guess like other virus' they can be dormant but then due to stress come to the surface. We found a medicine for it in Canada but I haven't needed it and it would have further depleted my immune system.
I also found out I had thyroid problems and adrenal exhaustion which I am dealing with fixing now. Energy is up up up, then CRASH AND BURN.
I too have IBS and it does cause nausea. I take prevacid in the morning now before my meds to lessen the blow to my stomach and try to eat as much fresh foods as possible. I also take pill form probio's because dairy is no good for me. My functional doc said my missing link (after fixing the medical probs) was nutrition and exercise.
Finding good docs who will dig deeper has helped me move forward along with doing exactly what the good ones tell me to do. One by one I feel like I've slayed some dragons but I think for everyone it's an ongoing battle. Between modern medicine and functional medicine I am trying to find the best options for me. I wish you luck.
Good luck and gentle hugs,
Leo
Also, I'm not on any meds. I have never been on medication for my fibro because I never needed it. I'm not taking anything at all for the pain. On a scale of 1-10, I'd say it's about a 3.
I think I'm going to treat it like IBS and a fibro flare then go from there.
http://pilladvised.com/2010/10/do-you-have-leaky-gut-syndrome/
I just this week learned that intestinal polyps can cause the symptoms you're describing if they are large enough. Have you had a colonoscopy recently?
I am so sorry you're fibro and GI keep giving you mixed signals!
Not having insurance is really tough...does your whole family including the kids not have insurance? I ask b/c perhaps you are eligible for your State's health plan?
I think, it might be good to get a colonoscopy and endoscopy - these 2 tests can rule out a myriad of problems and meeting with a GI specialist might give you more definitive answers.
Most Dr's will work out a payment plan for the procedure with you, it's really about getting money for the office co-pays. Of course it would best if you qualified for State health care, but barring that, You could call a few Drs- this is the tough part- Get past their secretaries- have the Dr herself call you back, and explain your problem. It's my experience that the Dr could care less about your co-pay and will write it off later...
For Ex. Once I could not afford to see my Immunologist-he called to see why I cancelled. I said I did not have the co-pay. He said "Well, I'm not going to chase you down over $35. I said could you tell that to your office staff and billing dept?" Ten minutes later I had my appt with a waived co-pay.
A lot of Dr's just don't even know how co-pays etc work.
So, if you can get past the office staff, and speak directly to the DR-I have found the Dr's themselves will often agree to do a consult, see you as a patient, for free or on a sliding scale...
I really wish you the best...
LuLu
But I thought I would mention that with a flare - and sometimes just with intestinal problems if you're not absorbing all you nutrients right - you can get the "I feel exhausted but my energy level is okay," compared to the 'no ounce of energy' in CFS.
Just FYI from my experiences in life...
If you are not taking other meds, low dose naltrexone, 1.5 mg in the mornings may be just the thing. It boosted my energy tremendously.
I agree with others that maybe Prevacid will take care of it. Given the price of probiotics, you might want to try sauerkraut and/or kimchi.