First appointment

Hi everyone,

I am new here.  I have been diagnosed with hypothyroidism and are on meds., but am still having lots of symptoms.  The fatigue is terrible and I still can not lose any weight.  I am having pain in knees and bottoms of feet that I have never had before.  Just lots of weird stuff.  My Dr. suspects fibro and wants me evaluated by a rhuematologist.  My appointment is Sept. 11.  

Does anyone have any advice on what to expect or what I should ask for?  I really thing after reading alot here on on EBV forum that I may have Chronic Fatigue brought on by Mono in May of 06.  That is when my symptoms began and I have never felt normal since.  The GPs I have told this to really just ignored me.

I would appreciate any advice.  Do most rheumys believe in fibro and chronic fatigue?

[PlateletGal]

Welcome aboard ! You know every single time I see someone write that they've been ill since they've had mono... it reminds me of all of the times I saw physicians for years searching for answers. I kept telling them over and over again that I had health issues about I had mono when I was a teenager.

Can you list all of your symptoms for us ? Do you have any joint paints, numbness, weakness, muscle aches, unrefreshing sleep, allergy problems, etc ? We've seen some people who post here diagnosed with fibro, although most of their symptoms that they listed were consistent with CFS.

[Cindy40]

My symtoms (symptoms) are:

I feel the same when I wake up as I did when I went to bed.  The bottoms of my feet have started to hurt at times.  I have pain in knees and hips.  Have been diagnosed with tendonitis in hip.  Have mental fogginess at times.  The biggest thing right now is the fatigue.  Not sleepiness-not that i can't sleep for hours-but just a all over tiredness.  I also have muscle weakness in arms and legs that makes any exercise impossible.  I have trouble swallowing at times.  The fatigue is worse after some kind of exertion.  I walked up 3 flights of stairs and could not breathe and was practically in bed for 3 days.  

Diagnosed as hypothyroidism in Spring.  On 50 Mcg of Synthyroid.  I can not tell any difference in how i feel.  This has progressively gotten worse over last 2 years.

[Cindy40]

Forgot to add that I have general, aching pain in legs sometimes.  

[PlateletGal]

It sounds like fibromyalgia symptoms (at least primary). I'm sure the hypothyroidism is probably contributing as well.

Here is an excerpt and link to an article that you may want to print for your Endocrinologist. This applies to fibromyalgia and CFS patients :

"The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."


Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/fibromyalgia-treatment.htm

[karen717]

I have had fibro for years. Your symptoms are common with fibro as PlateletGal suggested. I have the sleep issues as well, the hip pain, the leg pain, feet pain, etc. I also have the fogginess, fatigue, and muscle weakness. I think the best thing to do when you have your Sept. 11 appointment is to describe your symtoms (symptoms) in detail. The least thing could make a difference. Write things down before you go so you don't forget symptoms. Also, write down what your dr. says at the visit. I often take a pad and pen w/me and write as they talk. The fogginess may not let you remember everything said. Also, if the dr. presses on your body in a place where it hurts, tell him/her it hurts. Don't think it is supposed to feel that way. Ask lots of questions. Write down your questions before you go. If the dr. acts like he doesn't have time to talk w/you, find another dr. It is important w/firbro or anything else to have a doctor that will listen and take the time you need. I pray that this is not fibro b/c I know what that's like. Good luck and keep us posted.
Karen

[Cindy40]

Thanks a lot for your comments.  I am a little nervous about going to the rhuemy.  Writting down my symptoms is a good idea.  I can never remember everything when I go.

I just really hate the thought of getting a Dr. who dosen't listen, or one that it seems I know more than him.  My reg. Dr. seemed pretty peturbed when I requested further testing on my thyroid and I informed her that the lab ranges and what the Association of Endocrinologist are different.  That is when she offered a refferal to a counselor.

I never thought about writting notes while I am there, but sounds like a great idea.
I will keep you posted.

Karen,  its funny that you said, "don't think it's supposed to feel that way."  I think that it took me having some major episodes to realize that.  I think it had been so long since that I had felt "normal" I have forgotten what it feels like.  Every time a Dr.would tell me that a test came back normal and they didn't know what was going on, I started to believe that maybe there wasn't anything really wrong with me.

Then last spring I woke up and felt great.  I felt refreshed, had lots of energy.  I thought, "Wow, this it how I used to feel in the mornings!"  2 hours later I was sick as a dog.  Nausea, dizziness, fatigue.  It was an awful feeling.  I had to miss class and go straight to bed.  I slept most of the day and all night.  The nausea and dizziness was better, but I was exhausted for about a week.  This happened 4 more times.  When I went to the Dr. they looked at me like i had lost my mind, but did test thyroid.  TSH was high.  I kept asking, why did I feel so good all of a sudden?  No one could or can give me an answer, but It made me remember what feeling good felt like and I knew I needed to get help.

Everytime a Dr. makes me feel like there is nothing wrong, I tell myself to remember that feeling.  That is how I am supposed to feel, not like I do now.  If my body remembers it, then why can't they figure out how to find out what it is.