Fatigue, pain, weakness, odd sensations.....can't get a diagnosis

[Skyblue47]

So this is going to be very long, sorry, but I want to make sure I can explain everything thourougly.  I'm 25 and Starting around 8-10 months ago, I have been experiencing a number of debilitating symptoms and no doctor I've seen can seem to figure out what the problem is.  It stated out as pain (muscle soreness, achy joints, sometimes sharper pains mainly in my knees and elbows).  A few months after that, I started getting this vibrating sensation that moves around but is most often in my arms or legs.  It almost feels like my muscles are quivering or twitching really rapidly, but it's not visible, it feels internal.  The only visible shaking is a slight tremor in my hands.  This feeling seems to be worse in the morning, along with a feeling of intense agitation or restlessness that only goes away after a few hours.  It's really unpleasant, sometimes I'm afraid to go to sleep at night because of how I know I will feel when I wake up.  The only thing that helps a bit is Xanax, but it doesn't make it go away, just makes it less intense and I don't want to get addicted to it.

A little while after that started, I began to have these episodes of extreme fatigue.  It feels like every bit of energy has drained from my body and even simple actions seem to require an immense amount of effort.  It's like my muscles get fatigued really quickly, sometimes I can only take a few steps before my leg muscles start burning and become very hard to move.  Even getting up to go to the bathroom can leave me exhausted and breathing really hard, like I just ran a marathon or something.  These episodes can last minutes, hours, even days.

I've had various other symptoms too, like nausea, abdominal pain, temperature fluctuations (usually I get really cold, sometimes shivering, but I get really hot at times too), excessive sweating (my hands and armpits become absolutely drenched, even when I'm not hot or doing any sort of activity), brain fog (like all my thoughts are slowed down and I can't concentrate or focus, makes it hard to even form a coherent sentence sometimes), heart palpitations (pounding in various parts of my body, mostly), chronic headaches, dizziness/lightheadedness (mostly when standing), partial numbness in my limbs.  Whew, I think that's everything.

I've had all of the obvious tests done (Lupus, Lyme, B12 deficiency, anemia, thyroid function, adrenal function) and have seen my PCP, a internist, rheumatologist, endocronologist, and neurologist and none of them had any answers.  I don't know if MS is a possibility, I had a brain MRI when my symptoms were first starting (looking for a pituitary adenoma, not MS) and it was normal.  I live near Mayo Clinic and have tried to get in there, but was turned down both times.  Some doctors have said it's just anxiety or stress, and i don't know, maybe some of the symptoms are, but I know that something else is going on here.  I'm getting really desparate and don't know what to do at this point.  Any help or suggestions would be greatly appreciated.

[TheLightSeeker]

The results from the "obvious" tests you mentioned, could be what separates you from being healthy.

As Mark Twain once said:
"It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so."

-- B12 only tests for cobalamin levels. useless if your body is not able to convert to bioactive form methylocobalamin.
You need an MMA test for this (repeated a few weeks apart and you will also get your methylfolate levels.

--Lyme disease is NOT recognized as chronic infectious disease by conventional medicine!
You might as well knock on deaf doctors doors,lol!
Look into LLMDs (Lyme Literate medical Doctors) and
IGeneX Labs for testing.

-- Lupus is very complex to diagnose and may take years
to arrive to a diagnosis!

-- Thyroid function is rarely tested for.
Usually patients get only serum levels of TSH and sometimes T3 or T4.
Unfortunately MOST patients with thyroid-resistance
go UNDIAGNOSED! Even worse, they may end up misdiagnosed with some other disease and be stuck
with it for life!!!!
Ask and insist for thyroid function (the only thing that really matters!) tests: Free T3, Free T4 and Reverse T3.

Adrenal function must be at the level of almost total
adrenal failure (adrenal insufficiency) before conventional doctors consider anything-too late though as there's no recovery from that, only maintenance!
You need a 4x saliva cortisol test!

Doctors sometimes can miss vital information on a CBC,
or not consider lower range findings significant enough to
prompt any action, thus leaving the patent in limbo!

Do not continue on the medical merry-go-round ride any longer!
Please seek a reputable Functional Medicine Doctor to help
you with most of your issues.
For Lyme's though, I would probably choose an experienced LLMD.

Best wishes,
Niko

[Trollz500]

Same situation over here try taking alpha lipoic acid to help with your nerves taking 200mg per day can lessen the nerve body aches pain, working out the areas where you experience aches. I can't get a diagnosis either and I've been experiencing nearly all the symptoms you're having , I feel lost . I really think at this point in time you got to be your own doctor set a diet , research seem vitamins and don't stop looking for a diagnosis go to the hospital if you have to and admit yourself to get help. Good luck!

[scmommato3]

I have no advice for you, I just wanted to let you know that you are not alone. I am 25 and have been suffering similar symptoms since August. Do you have any swollen nodes to go along with your symptoms. I'm just wondering because I have them everywhere but had a biopsy of one and it was benign. I hope you find relief soon.

[Vaelon]

I'm not a doctor, but I am a recovered Lyme sufferer.  Definitely reconsider Lyme as a possible diagnosis.  TheLightSeeker already mentioned some great points, but I would second the opinion that IGeneX is the best lab for Western Blot analysis as well as the fact that many conventional doctors will misdiagnose or not acknowledge chronic Lyme.  

I had many of the symptoms you mentioned and pretty much all of them can be from Lyme.  You mentioned feeling cold and hot; I'd recommend getting a good thermometer if you don't have one and creating a temperature log recording your temperature at least 4x/day.  I found that Lyme tended to depress my body temperature from it's normal 98.6 F and it gradually recovered as my treatment progressed.  Second, make sure your doctors give you copies of your Western Blot (WB) tests - there are different bands and if your doctor is solely relying on the CDC official bands for Lyme, it maybe missed.  Post your WB tests in a Lyme literate community such as lymenet.org and they can help interpret them.  Another test that my Lyme doctor did was called a CD57 and its seemed to be a pretty decent indicator of my overall progression with Lyme treatment.

Finally, even with the right labs and additional tests, Lyme is a clinical diagnosis.  I'd recommend seeing a LLMD (lymenet.org has resources on that) to get a second opinion.  Best wishes and always be your own advocate for getting answers to your health issues.