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Hello! I am a newbie here and I am at the end of my rope with this fatigue!!!!
Everyday seems worse, especially after any excertion.

I have been feeling tired and aching for over three years so I finally got fed up and went to my doctor - she said it was allergies. But after some allergy treatments I just wasn't convinced. So I saw an internist who referred me to a Rhematologist - who referred me back to my internist - who told me to just "ride it out and deal with it, and it may go away in a couple of years". At first they thought I had Lupus but after a huge panel of testing they could only come up with CFS/Fibromyalgia. My ANA is highly elevated. My CRP is highly elevated. My urinalysis came up positive for protein. And my thyroid gland is slightly enlarged.

So I was give Naproxen and told to take it 2x daily and that was that. This just does not feel right to me. Does anyone out there have a doctor that really believes that CFS is a serious illness that needs treatment, because mine just thinks that it could all be in my head!

What medications are normally prescribed for this? Nutritionists? Phys. Therapy? I would think there has to be something I can do.

I have 3 kids - all under the age of 8. I can't even clean my house anymore, I go to mop the floor and I am wiped out for days. I used to be a college track star and state champion in gymnastics. Now I can't even do a stupid exercise video without being in utter pain and exhaustion for days. My headaches are unbearable, pain in my hands and legs I feel like I am coming down with the flu almost everyday - sore throats, chills you name it I feel like I got it.

Help!!! :confused:

I was diagnosed with fibromyalgia several years ago but was never given any treatment that was helpful. Antidepressants seem to help some. Stress definitely makes the pain worse. Are you a stay-at-home Mom?

Sounds like you've had an awful time of it. CFS cannot be diagnosed without having first excluded everything else. You say you have a slightly enlarged thyroid - have you had a thyroid profile done? That could indicate any problems there and certainly thyroid problems can cause all of the symptoms associated with CFS.

Doctors can be maddening. Mine is completely unhelpful too. She diagnosed CFS at the end of last year, gave me antidepressants (to take in the morning - excellent, they added to the fatigue during the day and messed with my sleep at night!) and told me to get on with it.

CFS is not in your head. The only time it becomes a psychological problem is when you're having to struggle by yourself to get a proper diagnosis and treatment and no one is helping.

My advice - get checked out for as many things as possible first to exclude stuff - especially thyroid problems, as these are common in women and prevelence increases with age.

Wishing you luck.

kiya :)

I have been having health problems for 12 years and was diagnosed with CFS. I was ok until october when my brain started having balance sensations and I had fatigues which switched on and off. I have started tertroxin (T3) and my balance has got less severe. I am not better yet but feel less frequent balance problems. I am worse after getting back from work in the evenings and it takes time to get the symptoms down. My doc is going to increase my dose of T3 as it seems like it may be helping. He also told me at my appointment that he thought my thyroid was slightly enlarged. How do they know yours is enlarged? Mine just felt around mine with his hands. Also what is your FT4 and FT3 levels and TSH? I had a high T4 and a mid range T3 and TSH 1.7 (0.4-4.5 if i remember correctly) I feel weird in my head in the evenings still though. I have my fingers crossed that the T3 will continue to work. Let me know your levels and I will see if I can help you.

Martin

Just until this utter exhaustion I have not been able to get back to work. I am at this point a stay at home mom, yes. I was in advertising and never had problems until three years ago.

I have had so much blood work done I can't tell you what levels are what except for the specific ones that were abnormnal. ANA was elevated. CRP elevated. Creatinine elevated. Protein elevated, and my thyroid was diagnosed as "mildly" enlarged after an ultrasound. But all my thyroid tests have returned normal results...
I get a mind boggling itch all over every once in awhile...feels like my skin is crawling sometimes, no one seems to have a diagnoses for that either. I am going to see my 4th internist/rheumie next month, he is supposed to be a clinical researcher as well. Who knows what he will say. I am already on antidepressants and that does help a little with the down times - like when your doctors can't give you an answer except to say that you need to "deal with it"; and when going to the grocery store puts you sout for hours afterwards.

My first suggestion is that you might want to consider finding another doctor. Any doctor who tells a CFIDS patient to "deal with it" needs more schooling, in my opinion.

With CFIDS you pretty much have to deal with each symptom as it arises, because this illness affects all organ systems. And, yes, more than one organ system may be affected at a time. It is also quite common for those with CFIDS to also have Thyroid problems and these can be detected by doing a thorough thyroid panel. I pretty much use the medical establishment for diagnostic information only. I then take that information and use alternative methods to deal with symptoms.

All the best!

I plan on seeing another Dr.
I was also told my cortisol levels were a little low as well, but he didn't seem to think this had anything to do with it. I was put on Prednisone for what I thought was a severe allergy and I can't believe how good I felt on that stuff. Like my old self again. Unfortunately steroids has its own reprecussions, but at this point I would rather feel good for a little while and enjoy some good times then drag around like road kill for the rest of my life. If this next doc says he doesn't think there is anything wrong - I might just seek out a voodoo priest, lol.
There has got to be some links here that we can put together and get someone in the medical profession to listen to.
Is it the chemicals in our food perhaps? Those hormones they feed animals with I am sure cross over. What about the Hypothalymus? Has anyone heard anything about that? Low blood pressure?

I believe the magic word here is "thyroid"--if your thyroid is enlarged, there is a very good chance that you need to be on thyroid medication. The problem is (and I speak from going un-diagnosed for many years due to always having "normal' thyroid tests) is that the TSH blood test often will be in the "normal" range, when in fact you are really hypothyroid. All of my many symptoms have decreased after finally starting Armour thyroid 18 months ago.

Many of the recent diagnoses of fibromyalgia & chronic fatigue have only existed since the 1970's when doctors started relying on the TSH test instead of symptoms, to treat thyroid disorders. Many alternative MD.'s believe that many people diagnosed with these disorders really have either undiagnosed or undertreated thyroid issues at the root of their problems.

Good luck to you!

Marsanne, I agree about getting a complete thyroid panel done. Make sure it includes the Free T3, Free T4, and antibody tests. Hypothyroidism can cause high cholesterol. I also argree about posting your results on the thyroid board here. The people and advice are wonderful.

I think Lyme disease may also be a possibility. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many seemingly unrelated symptoms. For more information on Lyme, see the "Lyme Disease Information" post at the Lyme board on this site.

Keep searching, you will find out what is wrong.

:D Well first go tell your doctor to jumpoff a very high cliff , just kidding ... But you really do need to find a doctor who will treat you ! I ask any doctor I go to on the very first visit " I have fibromyalgia and chronic fatigue do you know what these diseases are ??? Will you be willing to learn what they are in ordewr to help me to deal with the pain and fatigue and depression ??? Then I go from there I went to my first visit with a new general MD yesterday and even though I was there for a lymph gland infection I asked him the questions and told him honestly that I am in need of a docotr who at least will refer me to other doctors if he can't help me ... He has me concerned but not defeated yet . He told me that fibromyalgia is not a disease it's a syndrome he says .... :eek: IS HE KIDDING I was screaming inside while I asked all the other questions ... He is at least willing to get me to any specialists I may need to see . My last doctor an old fool who needs to be turned into glue lol . :jester: told me that he'd give me all the narcotic meds I can eat but he refused to even look into any treatment !!! Then he decided that i was useing to much demoral and he cut that perscription down too ... So you really need to quiz these doctors eventually you will find one that actually wants to help you ... They are out there if i can find a good one in Arizona then anybody can ... :wave:

I believe the magic word here is "thyroid"--if your thyroid is enlarged, there is a very good chance that you need to be on thyroid medication. The problem is (and I speak from going un-diagnosed for many years due to always having "normal' thyroid tests) is that the TSH blood test often will be in the "normal" range, when in fact you are really hypothyroid. All of my many symptoms have decreased after finally starting Armour thyroid 18 months ago.

Many of the recent diagnoses of fibromyalgia & chronic fatigue have only existed since the 1970's when doctors started relying on the TSH test instead of symptoms, to treat thyroid disorders. Many alternative MD.'s believe that many people diagnosed with these disorders really have either undiagnosed or undertreated thyroid issues at the root of their problems.

Good luck to you!

I totally agree. I don't know another area of medicine where healthy people with TSH >5 are treated with drugs and those with borderline/high-normal TSH are classed as having CFS. Totally ridiculous!

Did your TSH finally rise outside the "normal" range just before you were started on Armour?

Hi Kiya,

No, actually my TSH never went over 1.8 --but my free levels were in the low-normal range, and my thyroid was enlarged and I had several relatively small nodules. I probably found the only doctor in town who actually used Armour and was willing to start treatment. Unfortunately, he didn't know how to continue treatment and he kept me on too low a dose and was a real tyrant about losing weight. I kept telling him I had never had a weight problem before and I was sure I was under-medicated but he insisted I was not took it real personally if I didn't lose weight every month. (which of course I didn't!)

I have still not found the perfect doctor, but know enough now that I will insist upon being properly medicated and for me that means my TSH is below .01 and my free levels are in the upper range.

Hi Kiya,

No, actually my TSH never went over 1.8 --but my free levels were in the low-normal range, and my thyroid was enlarged and I had several relatively small nodules. I probably found the only doctor in town who actually used Armour and was willing to start treatment. Unfortunately, he didn't know how to continue treatment and he kept me on too low a dose and was a real tyrant about losing weight. I kept telling him I had never had a weight problem before and I was sure I was under-medicated but he insisted I was not took it real personally if I didn't lose weight every month. (which of course I didn't!)

I have still not found the perfect doctor, but know enough now that I will insist upon being properly medicated and for me that means my TSH is below .01 and my free levels are in the upper range.

Jasmine,

How much Armour do you take a day? I find if I go over 45mg. (even in split doses) it makes me too hyper. My TSH is 0.42, T-3 1.1. Also, my problem is the opposite - difficulty gaining weight. Any thoughts on these numbers?

Hi Peregrine,

I am currently taking 90 mg. of Armour and just recently started taking it by letting it disolve under my tongue, which I think helps with the absorbtion. I just had bloodwork done last Friday and don't have the results yet. I am very needle-phobic and tend to procrastinate on lab work!!

It's interesting how different we all are in terms of how much thyroid we need and what our optimum levels should be. What kind of symptoms do you get when you start to feel hyper? Have you always had a problem being unable to gain weight? I used to be able to eat like a horse and never weighed over 120 until I quit smoking at age 48 . I suspect my thyroid was failing at that time, and when I quit smoking all the symptoms became very obvious. I still have about 40 lbs. to lose--its very depressing.

It must be frustrating for you to not be able to find your "perfect" spot!

Hi Peregrine,



What kind of symptoms do you get when you start to feel hyper?

Like I just drank 10 cups of coffee (actually, I can't drink coffee at all!). I think I must have a very high metabolism rate. Perhaps yours is low? Have you ever had it checked?

Any thoughts about my thyroid numbers I posted?

I, too, take my Armour sublingual so it doesn't interfere with calcium intake, etc.

Peregrine

I have the same problem that you do. My doctor said to take i b profin and deal with it. He is full off ****. i also have children one is 3 years old, and the other is 11 months old. I cant clean house with out being wiped out for a couple of days. I feel like im coming down with the flu every week that I try to do things. I have unbarable head aches too. so yes I no how you feel. No, there is nothing doctors can do or give to you. It sucks really bad.