extreme fatigue and no diagnosis

Skeye, welcome to the forum. I really hope you do not have CFS because there is no treatment or cure. You sound so much like me when I was first ill. I was working at a job I loved but just couldn't get enough sleep to take the fatigue away & you're right, fatigue is not a good enough word for how I felt. I am now on SS disability.

You need to find a Dr that knows about CFS. When you call, ask if they are familiar with CFS & if they treat patients currently with the syndrome. Then you need to be tested for everything that could cause fatigue. Sounds like your Dr's have been thorough in this but a double check doesn't hurt. A diagnosis of CFS is by elimination of everything else, while we are getting closer to a diagnostic criteria, we are not there yet.

I am glad you took some time off, rest & pace how you use your energy. That feeling of unrefreshing sleep is the pits. I hate waking up & wanting to just go back to sleep. Since I am no longer working I can indulge myself & sleep. My daughter & her 2 kids live with me & they have gotten used to my sleep patterns. I was dx'd by a Rhuemytologist, you might want to find one that handles CFS patients. Let's hope they find you don't have CFS but something treatable. Take care & keep us posted. Gentle hugs, Denise

Hi Denise,

Thank you so much for your support and suggestions. I really appreciate the input. Whatever this thing is that I'm going through is so debilitating, and it is extremely frustrating that something so pronounced has still yet to be diagnosed. My doctor has jokingly said before that he wishes that one day I would just come in with pneumonia, because that he can diagnose, treat, and cure! No more of this "invisible illness" nonsense.

Do you think that a rheumatologist is the best doc to see, then? Never seen one before. I've just been dealing with my pcp and my psychiatrist. My psych referred me to an endocrinologist, and I am in the process of setting up an appointment with her. He thought that an endocrinologist might be worth trying because of the fatigue, severe night sweats, and I am always freezing. Thyroid and adrenals have always been normal on blood work, but maybe there is something that we are missing? It's worth a try, anyway. I don't really have much to lose at the point...

You say that my situation sounds very similar to yours when you were first diagnosed with CFS. I know that there is no cure for CFS. It's just a matter of management, the basis of which is behavioral modification. But I'm curious, are you any better now than you were before? Is there anything in particular that really helps you (or alternatively, is there anything that you find makes you worse, other than stress, lack of sleep, etc)? Sleep, for as much as my body craves it, doesn't seem to help me. I can sleep for an entire day, and still feel just as bad afterwords. And stimulant medications don't seem to help either (neither caffeine nor prescription meds, like methylphenidate). I just feel so helpless. So even just knowing that someone else has been able to improve by any amount, be it small or large, would help me stay positive. Because it is really hard to stay positive when you feel awful all the time, but no one knows why, or how to fix you.

Thanks again for the help and kind words!

Skeye

Post Edited (skeye) : 2/10/2015 7:06:28 PM (GMT-7)

[[I feel like my body is shutting down and there is nothing that I can do to stop it.]]

Bingo- that describes it perfectly- I feel the same way- like it's slowly but surely shutting down- I feel like, at age 49, that I'm 90 years old- there are times my muscles are too weak to even stand up straight- I can of course, but it takes a lot of effort- and I just envision myself at age 55 or so bent over from weakness like a 90 year old might be-

[[I also have horrible night sweats, but am always freezing.]]

Yep- me too- (I have Crohn's disease too- so that might be causing my night sweats- but I know what you mean- wake up drenched, literally, head to toe- sweat pouring off, but I'm still freezing cold- it's very weird, I turn up my electric blanket, but it makes me sweat more, yet I'm still cold- it's a very uncomfortable feeling- and I can't find a happy medium- I've always said my internal thermal regulator valve is broken

[[but I feel like I'm fighting a battle just to get through each day. ]]

Yep- Very frustrating and exhausting- like you say, it's horrible telling these things to a doc only to have them say "Well I get tired too" I'm not good at describing that I'm not simply tired, but totally wiped out- no strength, Docs don't understand a debilitating exhaustion- because they've never had it- The problem is also that Chronic Fatigue isn't something that is visible- We 'look ok' yet on the3 inside we feel, as you say, like our bodies are shutting down

[[Sure, pain and depression contribute to fatigue.]]

Who the heck wouldn't be depressed having their lives taken away from them by such a horrible thing like fibro or CF? The depression isn't causing fatigue, the debilitating fatigue MAY cause the depression (Because the debilitating fatigue may be due to problems which make serotonin levels go haywire after awhile)

[[All I want is to be able to function like a normal human being!]]

Give magnesium and malic acid a try- it helps a little sometimes- also just keep researching 'natural help for Chronic fatigue", but please be wary- there is a lot of crap 'advice' out there and many charlatans snakeoil salesmen - watch out for key words like 'proprietary' 'only found in our formula' etc (look up natural health scam keywords on the internet for a list of buzzwords to watch out for- these scammers use buzzwords to make their products seem like miracle cures- THERE ARE NO MIRACLE CURES- I need to stress that because so many false claims around the internet suggest they can cure you- don't fall for them- some supplements can help some- but do a lot of research before trying them- and try to go with those ones that have been clinically trialed and show a bit of promise-

Look into Nootropics- I've recently tried Sulbutiamine, which is supposed to help mental clarity, help ease muscle tension, etc- so far it seems ot be helping a little bit- just started yesterday- one of my main problems is intense muscle tension and mental fog- so far this product seems ot be helping my muscles relax which is a big help- hopefully it continue helping-

If you suffer muscle tension, you can also try Valerian Root, to help with sleep at night and muscles tension- It does however make me a more little groggy in morning- but it's not too bad- I seem to sleep a little more soundly it seems-

Oddly, I have found that anything with acid, like tomatos, fruits like berries etc- make my weakness/muscle pain worse- as does vinegar- take note when eating any of those if the nxt day you seem a bit worse- just a thought-

also they say to avoid nightshades like potatos- but I love potatos, so I eat them anyways without much problem- maybe I'm a bit worse next day, but not badly so it seems-

You can try bland diets for awhile, to see if your symptoms improve a little-

Believe me, I have wasted a LOT of money trying one product after another- Fell for the hype and false claims of far too many products- These scum scammers prey on desperate people- and those of us who were once healthy, who become weak and even lose our jobs are a pretty desperate lot- hoping to find something to restore our strength and stamina- and these scammers o n the net know it- and become wealthy off of our desperation

I tried D-Ribose to no avail- helps some- but not many it seems-

Tried MSM- didn't help at all- just made me smell like sulpher

Tried so many worthless EXPENSIVE things that did nothing-

Some of the things that helped the most were the least expensive (IE: Magnesium, Malic Acid etc)

I personally don't do well with stimulants like ginseng, or epinephrine or whatever (although I drink tons of pepsi with no real issues) I've tried things like '5-hour energy' drinks, and they seem to make me worse- jittery, anxious etc- muscle relaxers seem to help me the best- I was on hydrocodone for about 3 years, and like a dummy I stopped taking them because I didn't like being addicted, and now I'm suffering terrible again and docs won't re-give me pain meds as they are really cracking down on docs giving pain meds- So I'm looking into natural muscle relaxers like the sulbutiamine I mentioned

It's going to be a long frustrating journey- and there won't be much help- but you can find things that make it a little more bearable hopefully

Have you had a sleep study done? I was exhausted....and it got worse...I had put on weight due to being less active cause of the fatigue...I developed Sleep Apnea....Once I got that treated, I was still exhausted, but not as bad as I was there for a while....Also, I seemed to take a turn for the worse...turns out the Diabetes was making me tired, high blood sugars. High blood sugars can make you quite drowsy.
Have you checked for Celiac disease? Also, even if you test negative for it, you can still have a sensitivity to gluten that can cause fatigue. Aspertame poisoning could make you real tired too. I hear many people diagnosed with fibro go off aspertame, and get better. What about chronic lymes disease? Many mainstream docs dont even believe in it, but there is more and more evidence to support it as a real problem.

I kept doing research, and coming back to the doctors asking for different tests or different specialists....my docs were not very creative or assertive...finally, about 15 years of seeking a medical diagnosis, my sleep specialist sent me to Mayo Clinic in Rochester, MN. he medicated me to the hilt, and it wasnt working. Mayo has a fibro/CFS clinic that finally diagnosed me. They can rule out everything else. It took two trips. I was undiagnosed before because I dont have swollen lymphnodes for CFS, and they have recently changed the criteria for fibro...I am a-typical fibro, so hard to spot, even for the doctors who believe its real and were looking for it!

The med that saves me is Provigil, or modifinal. Its not an amphetamine. I can take a handful of those with no results, but Provigil helps me a lot. Now, if I push myself, and am too active, even that wont help me. When its working, it does not give me a buzz like amphetamines, but it does clear the brain fog and make me feel alert and refreshed, like sleep never does! If you want to try modifinal, and ur docs wont give it to you, you can order it without a script out of country. Its almost two grand for my script here, in the US, but I get extra from out of country for under 70 cents a pill, which is expensive, but it's worth every penny and more. If you don't order more than a 3 month supply, it's not illegal. Its not technically legal, but not illegal. its a grey area. what i researched says no one gets in trouble for it, cause its not technically illegal for small orders. However, the shipment also can get hung up in customs, so I order from sites that guarantee delivery.
Nuvigil is a long acting Provigil, (armodifinal) which you can also order out of county with out a script. If your doc is willing, perhaps you could get samples of either of these?
Also, some pain meds help make me alert when Provigil fails me. Now, you cant take pain pills as a stimulant I dont think, its just nice a side effect for me! They all have differnt affects on each person though.

I am on the verge of getting a SADD lamp. If you have depression, you shoudl be able to get one covered. I hear they help with energy. I am anxioulsy awaiting mine to see if it helps.

If you have cfs or fibro, than one huge behavior modification is to NOT PUSH YOURSELF!!! You may experience post-exhertion malaise....which means when you are active, you pay for it. If you overdo it, you are down for days, sometimes weeks. If you take a little bit each day, you come out further ahead than if you do it all on the few days you feel decent. Slowing down allows you to accomplish more, cause you crash less, and have more days where you feel better. I would monitor how much you do, and if the worse days are after activity. Mental activity counts, as does stress. All of these will make you crash if you have post-exhertion malaise. Many docs dont even seem to know this term, though its all over the web with fibro/cfs patients.

I am scattered here tonight, I hope something I said helps!!!
It seems finding the right doc is pretty crucial here at this point. I hope you get some answers!!

Hello there Skeye,
Thank you for your post. I too am sorry to hear all that you're
going through. You've gotten some very good suggestions in the replies.
What caught my attention was when you mentioned Lyme and
Erleichia. (spling) And your studying to be a vet. I'm told that 50%
of vets could have Lyme. I also was diagnosed with it 15 years ago.
Did you know that you can test negative on the tests and
still have it. There are also other co-infections to be tested for like
Babesia and Bartonella and others. And it can also be a clinical
diagnosis. I don't know if you did the Western Blot or which one.
It's important to work with a LLMD. A Lyme Literate doctor.
One who has experience treating it. It's a very easy illness to be
dismissed by mainstream doctors. So. Of coarse, I hope you don't
have it. But, it's worth really checking into it just to be sure.
There's a website, ILADS.ORG and if you go there and type
in your zip code they can give you LLMD referrals in your area.
Hope there might be something in this info that may be of
use to you. Good wishes with this.

Have you ever heard of Dr. St. Amand and Guaifenicine?

I have Mayasenia Gravis. And your symptoms are similar. Do you have trouble breathing, swallowing, double vision, extremely muscle weakness and problems talking. If you do perhaps see a very good nuero in a major medical center and ask them to ck you for MG

Thanks for the replies and suggestions, everyone. Sorry it took me so long to reply. I've had a lot going on, and I kinda forgot about this thread.

@Nazareth -- thanks. I'll look into the nootropics. Just looked up sulbutamine. Sounds like it might be worth a try. However, unfortunately, I don't think that I'm going to be able to take it at this time. I'm about to start an MAOI (for depression, although it has some potential to help with fatigue, too), and so I have to be careful with dopamine. MAOIs prevent the breakdown of dopamine, so taking another drug that would increase dopamine levels might be dangerous. I'll have to check with my doc, but I think that it's going to be a no-no. :-( And I totally agree with you that the depression is NOT causing the fatigue. Contributing some? Sure. But causing, no way! Not fatigue this severe! But no one seems to believe me. Even when my depression is under control, the fatigue is still there! But it's only my body, right?! So I must not know what is going on with it. :-p

@Momof2nSC -- I also have high cortisol, but none of my conventional docs have ever done anything about it. I don't have cushing's dz, so they basically said don't worry about it (may docs don't believe in adrenal fatigue, although I do). Could also be from poorly treated chronic pain. I was diagnosed with adrenal fatigue by an acupuncturist a couple years ago. But treating it did not help my symptoms (although my cortisol levels did even out). So I suspect that there might be more to it, even though that may still be a component.

@ptl4now -- yes, I have had a sleep study done. No sleep apnea, although I do have a circadian rhythm disorder. I worked with a sleep specialist for over a year, until he finally gave up on me. We tried everything to improve my sleep and fatigue (including the light box that you mentioned), but nothing helped. So one day he just told me that there was nothing else that he could do, and that was that. Was also on provigil for quite a while, but I maxed out on the dose, and it did not help enough to justify the cost (I also got mine from abroad, but it was still expensive). Also been on several different amphetamines, none of which have made a difference in my fatigue. :-( Wish I could not push myself, but I don't know how I'd make it through even a single day without doing so... I have to push myself just to function on a basic level.

@DancingDawn -- I did test negative for lyme via western blot, and also negative for co-infections. But yes, you are right, our current tests for lyme are horrible. Actually, our entire understanding of the disease is still pretty poor. And yes, tick borne disease is something that vets are particularly susceptible to. Fortunately (or unfortunately), I live in a highly endemic area, so the docs around here are all pretty familiar with the disease.

@Minnesota/keno21 -- Been on both guaifenasine and vyvanse, as well as IV vitamin infusions. The guaifenesine may have helped a little. And I'm actually thinking of trying it again (just found my old bottle of it this week, actually). The infusions also helped a little, but the effects did not last longer than a day or two. But unfortunately, there is no one up by school who will do them, as the doc that prescribed both the vitamin infusions and the guaifenasine are about 300 mi away. :-( Wish vyvanse had helped me as much as it helped you. However, I had a horrible experience with it. I have several genetic liver abnormalities that prevent me from metabolizing many medications. And my doc did not realize at the time, but vyvanse is one that I cannot metabolize. So I ended up essentially over dosing on it, because my liver couldn't break it down/eliminate it properly. And so after taking it for 2-3 days, it built up to a toxic level. I was fine, but it was a VERY scary experience. So now it is on my list of medication "allergies." And you better believe that from that day on, I now make sure that all my docs are VERY clear about my liver issues, and thoroughly research the pharmacology of every medication BEFORE they prescribe/administer it!!

@ToniC1 -- I was tested for MG 5 or 6 yrs ago. I don't have the laryngeal/pharyngeal symptoms, but I do have the ocular symptoms. So we looked into a bunch of things, including MS and MG. But everything came back negative.

@Magoo2 -- you are right, if there is one thing that I have learned from my health journey, it is that conventional medicine does not work for everyone!! I have worked with a lot of different doctors, etc, including many different holistic docs. And over the years, I have had most (if not all) of the tests done that you suggest. But unfortunately, I've still had very little success with my symptoms (if anything they keep getting worse), even when we have treated abnormalities that we have found. It's tough! Despite all that we know about the human body, it seems that we still do not know enough! It gets to the point where you have to start to wonder if it is all in your head! I know that it's not, but yet at the same time, I feel like I am going crazy because no one can figure out what is wrong/fix me!! Super frustrating! I'm sure that one of these days we will figure it out. I just hope that it is not 20 yrs from now...

Skeye