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mnfun2bme posted:
Hi All,
I'm not even sure what this all means so far.... but I know that it sends a myriad of emotions my way.
I've been feeling crappy for quite some time now.... likely almost a year. In January I finally went to a doctor who ran a major blood panel on everything from vitamin D levels, thyroid, hormone levels, etc. I found at that time that my throid was not working and was put on synthroid which has since been upped to a higher dose with a subsequent test. I've had major back pains and have been into my doc a few times for "trigger point injections" which helped with the severe pain I was haivng... that was months ago. My doc then ran a "ana" blood test and I tested positive for lupus. Last week, I went to the rheumatologist and he stated that he doesn't think my symptoms are consistent with lupus so he put me in the fibromyalgia category and viola, a diagnosis was born.
I've had so many emotions. Some of me felt relieved to know what's going on with this body of mine. It seems that it's the reason for my arms hurting, fingers, wrists, back, neck. I'm hurting and it sucks. I'm angry and I just want to feel better. I'm getting a taste of what "good day and bad day" means.
Is it common for your arms to feel like they weigh 1000 pounds? Does anyone have severe pain in their left arm? I'm going hoarse often (my throat feels almost constricted). I don't know what to make of all this.
The diagnosis seems like a melting pot for so many symptoms that vary so greatly.
Part of me feels so confused by the diagnosis. There is no cut and dry answer for anything.
My doctor put me on "amitriptilyne" which is an anti-depressant. It's a small dose but it seems to help me sleep a bit better. Tonight I took a pain pill along with the amitriptyline because I just want to go to sleep and wake tomorrow and feel better. Sometimes during the day at my job, I think I have early alzheimers... my head doesn't seem like it's on straight. It's so frustrating.

I need to figure out a way to sort through all of these emotions. Am I losing my mind?
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dollbug responded:
Hello and welcome....MiMi in NC...no, you are not losing your mind....FM is a very mean and ugly illness and some doctors have no idea how to treat people who have it. Anything and everything in dealing with the wrath of the dragon, aka FM, is a process which does take time and effort. What works for one may or may not work for you....but I am sure that soon you will be able to find the right combination of *tools and tips* that will help you cope better.

I hope you will check out the info here under *tips* and *resources*....I am sure you will find some good info.
The more you learn about *it* the better off you will be.

You should learn how to pace, pace and pace even more. Getting enough sleep is also really important for us FMers....it seems like we have something to deal with all the time though....it is a vicious cycle.

I do not understand why the doctor does not think the tests are right, since you tested positive for lupus. Did he say? There are no definite tests to determine if you have FM. Did your doctor check your *pressure points*?

Yes, you can indeed have all sorts of pain....all over your body. It might jump around or stay in several places. There is no rhyme or reason to most things which are associated with this illness. A lot of questions and no even answers. I think this is why doctors have such a hard time in knowing what to do for us.

Vitamin D....did your test show that you were low in it? Low Vitamin D can cause additional pain for a lot of people and it can also affect other illnesses as well. Are you taking any vitamins and supplements?

You might try taking a hot shower at night using lavender bath salts so that you can relax your body and sleep better.

Eating right and drinking plenty of water is also something which is really important.

Being stressed does NOT help the situation at all. Try to keep you stress level as low as you possibly can. Stress only makes your pain worse.

I wish I could tell you that there is a *magic pill* which will take away all of your pain....but IF there is, then someone needs to share this info with all of us as I am sure we would all like to know what it is.

We have to learn to cope....and this does take time and effort....hang in there and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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mnfun2bme replied to dollbug's response:
Hi Mimi,
The rheumatologist I saw stated that people with major hypothyroidism will often have a positive lupus (ana) test. He believes them to be false readings. He did check the pressure points and spent over an hour with us discussing my history. He spent a lot of quality time with us listening to history of my pain and even more time telling us about the history of fibromyalgia and what they know now about it. I respected him which is uncommon for me at an initial meeting with a doctor.

My main doctor is managing my pain"026although he has a lot of patients that he manages pain for with fibro, so far we haven't hit the nail on the head with mine. Today I wake with my neck/back/fingers/arms feeling so much pain that my fingers keep spelling words wrong when I type. Lots of backspacing going on to get this out! This must be what it feels like the morning you wake up after a car accident.

Yes, my vitamin D levels were low and I had just spent 10 days in the glorious Caribbean prior to getting the test done. I am now on a vitamin D supplement but my chiropractor tells me that I need to get out in the sun. He wants me in the sun at least twice/week during the high times of day (12-3pm). He said that would do me way better than even the supplement I'm taking.

I will comb these boards and learn as much as I can from the "tips and resources." Thank you for your support. I hope this day gets better because it's not starting out great.
 
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1wareaglefan responded:
Hi and welcome! I'm so sorry about your dx, but as you learn more about it, you'll find ways to make things better. That's interesting about the hypothyroidism causing a positive lupus reading. Or, I was going to say, you could have both lupus and fibro.

The amitriptilyne helps many people. It's an older antidepressant, and it helps with sleep (which is so important for fibro), mood, and pain. I'd give it a while to see how it works for you. You may find you need to add some things to that med. Many of us take a combination of meds and supplements to manage our symptoms.

I wish you the best! A really great book is "Fibromyalgia for Dummies." Also, anything by Dr. Mark Pelligrino is great.

Take care,
Elizabeth
 
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dollbug replied to mnfun2bme's response:
Hello again.....I would encourage you to do your own research about Vitamin D. I do think that being out in the sunshine is good for both the mind and the body.....but I am not sure that doing this, even every day, will be enough to get your level back up and keep it there.

I know that when I first got sick.....my doctor put me on the 50,000 iu of Vitamin D for a short time. My level was down to 12 or 14.....never can remember which. Anyway.....my surgeon told me that it was almost non-existence. Anyway.....it took me well over a year to get my level back to the lower end of what is considered normal. (which can also vary, just depends upon what you are reading).

My doctor told me that I would need to get at least 20 minutes every day with exposing 3/4 of my body in the sun.....(which I knew was not going to happen)....anyway....as I did my own research on Vitamin D.....I found out that there are a lot of doctors who have different opinions on Vitamin D.....and everything which relates to it. (there is a lot of information on the internet about it now).

I am still taking supplements....though and will continue for as long as I can. (my doctor told me that I would always need to be sure and take the supplements)

I know that vitamins and supplements are not the same for everyone.....and what works for one may or may not work for someone else. This is the same for medicines as well. (I learned this the hard way).

Anyway.....I am one of the FMers here who has learned how to control my FM pain by taking vitamins and supplements, after trying medicines that my doctor wanted me to try- but I did not find anything which really helped me enough without causing side effects.

Anyway.....as I said before.....I would certainly encourage you to do your own research and then decide for yourself.
And then as you do your own trial and error process....perhaps you will soon find the right combination of tools that will work for you. Hang in there and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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booch007 responded:
Ooooo red flag...

A couple of things in your note grabbed my eye.

First welcome to the Fmily, not sure you need to be here yet but, when you are hypothyroid (low) it is a major stressor for your body. All things run from thyroid. It makes the whole body dyfunctional and if low enough for long enough your heart can fail and you will need a transplant. SO in saying that.......

Getting the thyroid in line an being "euthyroid" (normal) IS SO important. Then the rest of your note sounds like me.

Someone must have found trigger points in you. I have been getting trigger point injections for 10 years (every 2 weeks) to keep up working as hard as I do. I love my doctor and love to HATE those injections.

I also can't swallow and feeling choking at times and I will explain. BUT you may have a goiter....(an enlarged thyroid from trying to make the hormone and failing) Has the MD said it is enlarged?

OK if you are me, I have problems with the scalenes that are the muscles that surround the nack and the SCM muscle that helps hold your head upright. They are my nemesis and so is the trapezius muscle...

Please buy this book, FM and Chronic Myofascial Pain, a suvival manual by Dr Devin Starlanyl...19.99 on Amazon.com

Best money can buy. It will help you to understand the cause and effect of the issues. The arms and hands are the muscles anterior to the arm pit and posterior. Once injected they release and my symptoms are better. I use heat and massage as well (though not even close to as effective as injections)

I bought the Travelle and Simmons Medical book to understand the anatomy. This was the book that the doctor touched and said you feel this because of this.....well IF I WAS IN A BOOK...I WANTED THAT BOOK! That was 10 years ago.

Though this is not FM it is CMPS we are so closely related and share the common thread of pain, it is appropriate to cross it with FM. We don't have fog and I only get fatigue if all the muscle are up and mad at me, it sucks the energy out of you....like the flu*.

I joined here after starting injections as she told me I would need a support group. It has been so helpful during frustrations and I learned from the early Fmily so much. I also saw we did the same things most of thime and I had figured it out on my own...

I am a nurse with cardiology as a specialty. I work for a highly secialized group of interventional Cardiologist. They are generous with me and let me work within my limitations as I work hard. Please look up under Dr Pellegrino at his discussion as he was such a gem to have here. I copy and pasted him to a file for re-read if I needed it.

Under resources is the MEMBER'S TOOLBOX....look there too, I started that 10 years ago as we had to repeat for the newbies all the tools we were using and so there was a place for people to go. My tools haven't changed much in 10 years except I added savella 12.5 to my box....OK, welcome and find out about the thyroid gland exam then look for scalene injections and strenocleidomastoid (SCM) injections when they relax you will be able to lay without the choking feeling. TRUST me, I slept in a recliner from those guys bothering me....

Glad you are here. Nancy B


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