What is the Matter with Me?
 

Hi. I decided to turn to this pool of knowledge in hopes that I could maybe get some insight and support.

My life has turned virtually upside down the past year. A year ago (I was living in Tucson), I could run, play basketball, lift weights, live my life how I wanted.

Today (although I'm living in a cooler climate) my ability to do any physical activity has gone. I cannot do anything physical without feeling very ill. In addition, I experience some sort of pain (on one level or another) most of the day. The following have been occurring off and on for about a year.

Symptom 1: I have experienced multiple migraines, which I never had before. These headaches happen on the sides of my head and generally start at around 3 or 4 in the evening. They will sort of oscillate in severity for the night.

Symtpom 2: This is one is bizarre and only happens when I am waking up or falling asleep. I feel a sort of ``buzzing/burning" feeling in my head and sides of my neck, just below the ears. This is by far my worst symptom and, thankfully, generally lasts no more than 4 or 5 seconds. The long episode lasted about a minute probably. But it was one of the most terrifying minutes of my life.

Symptom 3: I often wake up soaked in sweat. Not all the time though.

Symptom 4: I am experiencing burning sensation (not-similar to Symptom 2) and tightness in the right side of my neck and base of my skull. This is generally mild, but is very very annoying. This annoying burning-type sensation also radiates down my back at times (on the right side) and also to the back of my arms (triceps).

Symptom 5: I can no longer do any physical exercise whatsoever, because I immediately feel ill and tend to over-heat very easily. Also, all of my symptoms (1-4) do seem to be exacerbated by heat.

I have had a ct-scan and an MRI (without contrast or whatever) and both came back normal. However, I do have an enlarged nerve or something (I gave the report to my neurologist so I can't remember the name). But it was decided not to be an issue. I have also seen an endocrinologist due to Symptom 6: I often get bouts of extreme fatigue and feeling of extreme hunger. It's a very bizarre feeling that's difficult to describe.

If anybody has experienced any similar suggestions, or would offer suggestions, etc. Please let me know! P.S. I'm a 29-year-old male.

-Angel

Hi Angel,
In my 30's I experienced migraines all of sudden, and also never had them before. I also experienced several of your other symptoms. I had other issues like having trouble sleeping, thinking clearly, memory and oddly, got very drunk from only small amounts of alcohol. I also had a lot of joint pain and neuropathy in my face and head. It took many doctors years to find, after many wrong diagnosis, that I had Lyme Disease.

it is tough to diagnose because many doc are not well educated about it and the tests are not good. Also, many docs are very dismissive of how serious Lyme Disease is.

If you want more info, I am happy to help. I've spent decades battling the effects of it. I hope you don't have Lyme DIsease.
Best of luck getting answers.
D.

Hi Angel

Welcome to NeuroTalk - I hope that you will find the community as knowledgeable and supportive as I have.

As Diandra has mentioned, you might have some kind of neuropathy (there are many possible causes of this).

You could think about posting in the Peripheral Neuropathy NT forum. The members who frequent that forum will be able to share their experiences with you and suggest ways in which you can ask your health care team informed questions.

All the best.

Do you think this happened because of your move? Do you drink local water or bottled water?

It could still be a little pinching of the enlarged nerve when you are in certain positions. Are the muscles in your neck tight as well? I have what is called cervical radiculopathy which is basically just deterioration of the vertebrae and discs in my neck and I get a few of those symptoms on and off as well. It is worse when my muscles are tight.

I hope you get it figured out whatever it is.

What kind of test is needed to diagnose Lyme disease? And what kind of doctor will diagnose this? Oddly enough, I know a person who was diagnosed with Lyme disease a few months ago. I will contact them and ask them about their experience.

Thanks Diandra!

-Angel

Hi,

Yes, the muscles around my neck area do seem to be very tight. Especially on the right side. I will try to find out more about cervical radiculopathy to see what I can find out. In the mean time, how do you manage your symptoms if you don't mind my asking?

Thanks!

-Angel

Thanks for the suggestion! I really didn't know where I should post this. But I will give it a shot.

Regards,

-Angel:D

What caused my first symptoms, I cannot say. However, the symptoms did begin about a 1-1.5 months after I moved to LA. I recently saw a message on my phone that I had sent a friend complaining about my feeling tired and hungry all the time. This was in July 2015 and I moved out here in mid-June. I do not drink tap water, I only drink bottled water, teas and carbonated water. But this isn't to say that I have never drank tap water here. Occasionally, I will run out of bottled water and drink from tap.

Thanks!

-Angel:)

Look for posts under my name if you want to read more about my journey with Lyme disease and neuropathy symptoms.


Sent from my iPhone using Tapatalk

Blood tests are the main tests.
It is a great idea to contact the person you know who was just dx'ed if they live in your area.

In my state, Connecticut, your best bet for a doc is a rheumatologist, infectious disease or neurologist because if that doctor says you have Lyme Disease, even though your blood tests may be negative, your health insurance company, by law, has to pay for your treatments. Primary care docs are the worst for a Lyme dx because they blindly follow the very narrow current guidelines for diagnosis.
It is not a well understood illness that is dissed because there are not many fatalities from it. Sadly, it can affect the brain. The bacteria is a corkscrew like one, much like syphylis and it has similar symptoms, mental disturbances being a huge one. I met a psychiatrist at a seminar who said psychiatric hospitals are filled with patients who truly have Lyme Disease but the medical community, oddly, just won't acknowledge it.

My theory is that, when in the 1970's, all these Lyme Disease cases started to explode in Lyme, Connecticut, where the illness got its name, there was great concern in Connecticut. The actual census of CT dropped and people didn't want to move CT or take jobs here. Why would someone want to move to a state where you could get this terrible disease?
Hence, as it spread throughout the northeast, where very high incomes propel the tax base and the housing market ...slowly, it was made to look like a disease that was not a big deal and easily cured....a huge misrepresentation. I know so many people, like myself, who were permanently damaged because their dx was delayed for years. Also, 4 weeks is NOT long enough to treat but that is what most docs will tell you. I was treated initially for 6 solid months because it affected my brain and I had seizures, migraines, neuropathy that was so painful
I was bedridden. It was only after a months of IV antibiotics that my seizures stopped and I had some pain relief.

I am not trying to scare you, I simply want you to make sure it is investigated properly. I will get you the website that will steer you to the best doctors.


Lyme disease needs a clinical dx, meaning if all the symptoms are there and even if your tests say you don't have Lyme, if your doc thinks you have Lyme, then you get treated. I cannot emphasize enough that SO many folks who have Lyme are incorrectly dx'ed with arthritis, fibromyalgia, MS, neuropathy and are just treated for their pain or migraines etc and spend a lifetime suffering.

I truly hope it is not Lyme but if it is, quick and aggressive antibiotic treatment may stop it.

My best as you seek answers,
Diandra

p.s. just this month, a friend of mine who lives in Cape Cod, MA where Lyme
is very prevalent, got many symptoms. His wife bugged him to go to doc and his
tests were negative. He called me to ask advice. I said, keep track of your symptoms and if still having them, go back to doc for retesting. He went back 2 wks later and tested positive and he has a doc who is treating him very aggressively with antibiotics.

Thanks, I'll do that.

-Angel