Still no answers - just a vent

[Erin]

Originally Posted by drawlins27

Why did they rule out Chronic Fatigue Syndrome? That was the first thing I thought of. BTW CFS is a horrible condition to have and the name is VERY misleading. Could it be possible that you actually have multiple illnesses which is why the combination of symptoms don't seem to fit any one condition?

That's what happened to me. I had/have 3 or 4 different problems all in the same area. None of my symptoms matched any one thing.

I think it's time for new doctors. That's the only thing that worked for me. When the doctor stops helping you then it's time for a new one. I know it's crazy expensive, but it's the only thing you can do. When I finally went to my last doctor she said to me "I don't know this because I'm a better doctor, but because I have the experience and I've seen this in only about 1/2 dozen women ever before, and here's what worked for them..." I think she is a better doctor, but it's also very possible that those others had never seen it before.

[Graleyne]

One doctor insister that it was CFS. This was several months ago - March I think, but I'm not sure. At first they were talking about MS then settled on the CFS dx. The prescription was B-12, a good diet, and exercise. I DID start to feel a little better - until around late July/early August. By September I was as sick with an upper/resp infection, bronchitis, and ear infections. All of that has cleared up with the antibiotics finally, but now the symptoms I had back in March are back and worse than they were back then.

The doctor before last insisted just as strongly that it wasn't CFS. She said she didn't know what it was, but felt it wasn't CFS.

I had never heard of CFS until then and when I looked it up all my symptoms matched almost to a T so I don't understand what the deal is now.

[RowdysMom]

Are you near a University medical center? The University of Georgia medical center or perhaps they call it a Health Sciences Center? It will be associated with a medical school. Often you can go there and they will see you for low/no cost.

University medical centers/health sciences centers are always WAY more up to date on new/difficult diagnoses. THAT is where all the research is done to identify these new syndromes/diseases. It takes years sometimes, for it to trickle down to the regular doctor in practice.

If I were you, I'd get myself to a University/Health Sciences center as soon as possible.

Good luck!

[Yorkiekids]

Graylene I'm with you. I'm so sick of being sick I don't know what to do anymore. Prayers are coming your way that you will find a doctor who knows what the heck the problem is. I still haven't found one.

[Erin]

You know, the pain itself can lead to the exhaustion. You mentioned that you just crash on the couch. If you don't have CFS, the pain is probably just draining on your body. You don't sleep well when you are in pain, but it also just wears you out. It's physically taxing when you have to compensate, plus the emotional drain doesn't help. I was just discussing this tonight with my PT (while she was inflicting pain upon me, ha, but it was for my own good at least.)

[scrapindee]

I too think it is CFS or Fibro--it is horrible to live with--all chronic pain sufferers know what I am talking about.

Take it one day at a time....

[Tillys_mom]

My mom has a lot of similar symptoms that you have. She has high fevers, sometimes can't walk, breaks out in bad rashes, and sleeps a lot. It took her months to get diagnosed. They kept thinking lupus but it wasn't. It was something similar to lupus, it's called Still's Disease. You may want to research that online and see if it sounds like that to you. It's very hard to get diagnosed with it and my mom went to several doctors and was in the hospital before they diagnosed her. I sure hope they find something soon. I'll keep you in my prayers.

[Sandysbabies]

I can certainly feel for you. For several years I was diagnosed with arthritis in my back. Nothing helped and when others took even over the counter drugs that helped theirs my pain was horrible. Finally they found out (after changing doctors several times) that I have a herniated disc that is huge. Its laying on a nerve which effects nerves down my back and left leg. The pain is unreal. It never stops. I also have degenerative bone disease. I am going in the 13th of this month for surgery. It will be a 5hr. surgery and they will put in a metal plate plus rods. It makes me mad to think I have gone this long with no one helping and the wrong diagnosis in the start. Constant pain has caused me to be so tired I feel at times I can hardly lift my arms. So, I know how you feel. Bless your heart, I hope someone can hit on what it is, but the pain can cause your body to just be worn out. Please keep me in your prayers, I hope this surgery helps me to be whole again and I hope and pray for you that you can get help too.

[JennS]

I'm sorry, I know everyone is playing armchair MD, but I would see a rheumatologist...sounds auto-immune...Lupus, Sjogren's, there are so many possibilities I think you just have to get hooked up with the right specialist.

Easy for me to say, huh? So sorry, I can feel your frustration through your post...

[Graleyne]

I spent yesterday at the doctor's office so they could do more bloodwork. No wonder I'm so run down - they are taking enough blood to make a whole new me!

I am feeling a little better today. My house is being cleaned as I type and that has lifted my spirits a little.

My grandmother (who has been an RN for 30+ years) actually suggested I see a rheumatologist as well. Now I have to find a doctor who agrees so he will give me a referral so my insurance will pay for it. It will still be a $50 co-pay instead of a $20 one though because its a specialist. I hate insurance BS