Newbie with questions.

Hi, everyone. I'm posting in the fibro board because at this point, it might be the only appropriate place for me here -- apologies; I have not been diagnosed with fibro yet, though I feel at this point that I may be able to diagnose myself...But maybe not.

Strange things have been going on in my body since August 2011. Up until December 2011, we lived overseas and had no access to healthcare we could afford, so I wasn't able to start sleuthing with a Dr. until this past January. So far, she's tested me for all of the initial stuff -- vitamin levels, glucose, etc. -- plus something called a phaetochromocytoma (spelling?!), an adrenal tumour (24-hour urine test indicates i don't have that). I have a CAT scan at the end of this month and a visit with a neuro in July.

We had a very stressful life event in August, and I can pinpoint that is when my symptoms started. They started small -- my left arm started to feel "strange" -- like restless leg, but in my arm, sort of -- and then my elbow began to ache. Then my shoulder. Then my left pinkie and ring finger. Those symptoms waxed and waned, but then I started to get other sensations; extraordinary fight-or-flight reactions to ordinary, unstressful situations, random all-over twitches, feelings of hot/cold randomly materializing all over my body, etc.

So now, about ten months later. I now regularly experience strong cramps and aches in my hands and feet, particularly when I wake up, plus twitching in my fingers and thumbs. My feet are painfully cold and I have cold "patches" that travel all over my body. When my hands aren't twitching, they are filled with nervousness (I can't describe it any other way) and they hurt. The left side of my face has started to get numb and cold and tingly, my left eye feels irrirated and watery. Shooting pains at the top of my head, randomly, plus pain in my left eye, also randomly. Intense twitches in my legs and agonizing restless leg in my left leg.

These may sound like kind of minor symptoms, and i guess they are compared to what so many other people go through every day, but they frighten me because they are not normal and I have no control over them. Having a "medicinal" drink (read: rum and hot milk and cinnamon) helps at night, a little.

I also feel like I never have deep sleep. I wake up feeling like utter crap every morning, barely able to get out of bed.

My Dr. is confounded. She is cautious, though, and even if she might think I am nuts, she is sending me for all of these tests. Until the tests turn up anything, I need to find a way to deal with the symptoms. My Dr. gave me amytriptyline, but it was so awful and I could barely get through the work day -- I was in a fog and nauseated.

I should mention too that I am able to tolerate cardio and weight training; i have no muscle weakness. Just lots of twitching and sort of over-flexing of muscles -- they a needlessly tired and sore but not weak. My appetite is good. My energy levels are bad. I am still able to get through the work day (I work at a computer all day).

I have gone through all of the worries and am trying to make peace and not jump to any conclusions. My Dr. doesn't think I have a brain tumour because I've had the symptoms for so long and they can come and go, rather than being constant.

Anyhow, I am here to find other people who might be going through "mystery" health problems too, and find potential solutions for nerve pain and , for lack of a better word, misbehaviour. Does this sound like it could be fibro? My Dr. says probably not, because twitching and facial numbness don't tend to be symptoms?

Tildis,

Hello, and welcome. Take a look at Fibro 101, 2nd thread on the list. You might see yourself. It does definitely sound like it could be fibro to me.

For what it's worth, my doctor prescribed me NORtriptyline - 1st cousin of AMI - (it's less sedating) for sleep and pain. This was the first thing I tried, 20 years ago, and I'm still on it. So that might be worth a try.

It is scary when you have so many weird symptoms, and don't know why. We understand! I hope you keep posting, and good luck.

Debbie

Hi, Tildis, and welcome!  I'm so glad you found us and joined the family!  Much of what you have mentioned can happen with fibro.  The problem is, there is no specific test for fibro and it has many of the same symptoms as other illnesses so doctors need to rule out the other illnesses before a diagnosis of fibro is given.  It looks like that's what you are doing through right now.

 

Of course it's frightening when your body is acting this way! It's amazing what we can conjure up in our minds, too.  Try not to project yourself in the future.  None of us know what the future holds so just take one day at a time.  They will figure out what is going on and then you can try things to try to help yourself, too. 

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  This will give you an idea if you are really dealing with fibromyalgia.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

 

Sherrine

Amitriptylene was really bad for me. I snapped at my kids on days 2 and 3 of only 3 days of taking it. I called my doc and told her I wasn't comfortable with altering my brain chemistry. It was very disturbing because there was no build up/warning time for anger at all. I was as surprised as my kids about the angry outbursts!

Rereading your post, I noticed you use rum to relax. How much of it do you think you have usually? Because a lot of people with Fibromyalgia are intolerant of alcohol. By this I mean -- well, in my experience I feel really awful after I have alcohol, it's like all the hangover without any buzz/fun. Not that I was ever much a drinker anyway, but I used to like to make myself an amaretto sour or have some wine..but alcohol is not good for any cell in the body. It kills cells.

So that, and that I feel really awful after having it, I no longer have alcohol. See how you feel on the mornings after you have consumed alcohol and compare to the mornings when you have had no alcohol the night before.

I think stress and anxiety are causing some of your problems.  This happened to me.  I was a mess.  I didn't know what was going on and I was afraid to move!  Once my doctor suggested I was having anxiety attacks, half of the symptoms left.  They did come back and I was put on Valium.  That drug was changing my personality so I stopped it.  Then I read a scripture that helped me so much.  You will find it in my signature.  That's why I put it there.  Since I wrapped my mind around that signature, I rarely have problems with anxiety.  It has helped with fibro so much. 

 

I used to have the total muscle tightness...the shoulders up around my ears, etc....but I was put on a muscle relaxer, Robaxin, a couple of months ago and that has made a world of difference with this problem and with my pain.

 

I guess what I'm trying to say is to try to relax.  I alluded to this in my other post to you.  You are worrying about illnesses that might not be happening.  I did that too.  I'd start researching and my body would gladly go along with the diagnosis!  Once I stopped researching and let the doctors do their job, I was better.

 

I do get numbness periodically in my face...generally my upper lip, part of one cheek, and my chin.  That is frightening but it, too, went away.  This has happened to me several times so I'm not worried about it now. 

 

If you haven't had a chance, please read Fibro 101.  Many of your concerns could be helped knowing that people with fibro go through these things all of the time.  I'm sure you will get a diagnosis soon.  And NO, this is not all in your head.  Never settle for that diagnosis. 

 

Let us know what you find out.  We really do care about you.

 

Sherrine

Fibro and MS have many of the same symptoms.  I'm glad you have a thorough doctor.  If it is MS, there are medications to treat it and you will feel better.  It's better knowing what is going on than trying a myriad of things and not helping the problem. 

 

I'm sorry you are dealing with this but many, many people live very successfully with MS.  I look at Anne Romney.  The head of all the business programs on Fox News, Neil Cavuto, has MS too and he's busy enjoying his life.  I know it's hard whenever we get a new diagnosis but people are resilient and we can also adapt to our situations so try not to worry too much.  Stress always makes things worse. 

 

Let us know what you finally find out and how you are doing because we really do care about you. 

 

Sherrine