Still no answers - just a vent
 

I have been sick for a little over a year now. I have been sick enough that it is seriously interfering with my life for about 2 months. I have been to doctor after doctor. This week alone I have spent $200 in co-pays. I spent over 10 hours in the emergency room Saturday - after I spent 2 hours at Urgent Care and the doctor freaked and sent me there. They did a CT scan and took enough blood to create another me. All I walked out with was a referral to a neurologist. I have already seen a neurologist.

The past 3 weeks it has literally been all I could do to get up, get the kids off to school, then crash on the couch until time to pick them up, then crash on the couch again until Mike gets home. I had to drive to Alabama last Friday (had to go to my grandmother's house) and I had to pull over 4 times. What is normally an hour and a half drive for me, took me 3 1/2 hours.

I don't mean to whine. I am just frustrated beyond belief. I am sick and tired of being sick and tired. :mad:

I'm so sorry you aren't feeling well. Do the doctors have any ideas what is wrong? I hope you can get a diagnosis and start feeling better soon.

SWeetie,has anyone checked you out for fybromyalgia? I have it an it is debilitating at tomes.The doctor dx it by about 12 pressure points on your body! Do you have arthritis now? Its just a hunch. It does not show up in blood work and only has been dx in the past 10 years. I hope you feel better!

They don't have a clue. They have said no to fybromyalgia. They have a whole list of things they have said no to. They thought at one time I had chronic fatigue syndrome, but now they have even changed their minds and said no to that. They have said no to lupus. They have said no to MS. They have said no to a brain tumor or bleed.

Basically everything my symptoms say it could be, they keep saying no to.

I can not afford to keep going to all these doctors and not getting any answers. It has completely wiped my bank account and what little savings I had. As it is right now, if they do happen to decide once and for all what is wrong with me, I can't afford the cure - lol.

That is exactly what I was going to say..... I know a couple of people with the disease, and it is so very cruel.....

Gray -- I will keep you in my thoughts and prayers..... please do your best to keep from getting discouraged. Sending hugs :ghug: and get well wishes :getwellso

I hope you get to feeling better, and hopefully you can find the right doctor that can figure out whats wrong, so you can stop going all around town and nothing being done about it:(.

My mother has fybromyalgia and it took them almost 10 years to diagnose her correctly. First they said MS for about 8 years, then they said RA (rheumatoid arthritis) for about 2 years.... FINALLY they correctly diagnosed her and were able to treat her. She is tired a LOT... but its mainly the PAIN. Its SEVERE & INTENSE with fybromyalgia. Are you in pain?

What about MS, a viral infection, mono or narcolepsia? When I was younger I had a viral infection and the docs thought it was mono but it was not. I was exhausted ALL the time. Sleeping 16 hours a day. It lasted for 2 months. It was awful.

Good LUck girl, I hope they figure this out and help you soon!!! :)

I am in a LOT of pain. My joints hurt so bad I have sat and just cried. That is part of what landed me at Urgent Care and then in the ER Saturday.

Basically its severe joint pain, occasional fevers of 101 or higher, the palms of my hands will turn really really red and feel like they are on fire (sometimes this happens on my cheeks too, but most of the times its my hands), headaches, occasional nausea/vomiting, fatigue.

I also am having trouble walking - I can walk, it just isn't in a straight line and I stumble a lot. Like when I walk down the hall going to the bedroom I am literally bouncing off one wall and into the other, like a pin ball or something. Even the ER doctor commented on it and asked Mike if he'd noticed it too.

I just feel like I am basically a 31 year old mess. I just want to find out what the problem is and start fixing it so I can go back to living and enjoying my life again. I miss playing with my skin kidlets and Susanah.

You are so young to be having these issues. :( The stumbling sounds like an inner ear issue but that doesn't go along with the rest of the symptoms. very puzzling. Why did they rule out fybromyalgia?

I hate that you feel so bad. I have been diagnosed with Fibromyalgia and severe degerative disk disease. It is hard to diagnose fibro, because there is no test...they just rule out everything else, basically. Has your doctor(s) ever mentioned RSD (Reflex Sympathetic Dystrophy)? You can google it and see if it could possibly be that or you could at least ask your doctor about it. Take care.

I'm sure they've checked, but what about thyroid problems possibly. Have you tried dietary changes, like eliminating white flour, sugars, processed foods? I'm sorry you've had such a horrible time and hope you get answers soon.

For the tiredness I would suggest having your thyroid checked, but that doesn't explain all of your other symptoms.

For what it's worth, I can sympathize. I went through hell for many years of being in pain. I went to 5 different gynecologists and was told everything from "pain is normal for you" to "you have X disease" that I really didn't have! The clincher was when they wanted to put me on Lupron for Endometriosis without confirming that's what I had! After an ER visit for the pain and a kind ER doc who believed me, I went to a surgeon without a referral and demanded he look inside and find out once and for all what was wrong. The surgery resolved 75% of my issues, but when my Dr. at the time told me that was "all she could do for me" I moved on, and finally found a Dr. who did another surgery and now I'm in PT for the last of the pain. Everything I've been diagnosed with in the last 2 years has made complete sense, and they should have figured it out sooner. I'm 26 and I feel like I'm finally getting some sort of resolution. I'd been in pain since I was 16! Now I'm almost pain free but I'm still exhausted from years of never feeling well and all the emotion that comes with it.

I hope you figure it out soon.

Sickle Cell Anemia???

I don't fall into the ethnic catagories for that so I don't think they've tested for that one.

The test on my thyroid came back only "slightly elivated" and I was told I needed to have it "checked again in 6 months".

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.

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.

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!

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.

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.)

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....

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.

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.

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... :(

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 :rolleyes: