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advice please for undiagnosed pain sufferer
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jmbr84 posted:
hello everyone, im hoping you all could tell me how you went about getting diagnosed with FM, i will tell you my story so far:
About 6 years ago, i started getting pain in my neck, it felt very stiff and was sore to hold my head up, especially at night time, that was when i felt at my weakest. That is how it all began for me, fastforward to present day, and i still have the pain in my neck but now also pain in my shoulders and down my spine, weak and sore arms, weak and sore legs, muscle cramps and spasm, occasional cognitive problems, eye pain, migranes, sharp pains in my feet, heart palpitations, occasional breathing difficulties, extreme fatigue, mild IBS, and probably a good few more that im forgetting at this moment!
I have had every test going, done physio, gone to the pain clinic, and im just about to give up. The only piece of evidence i have is a few very minor disc bulges in my neck, but nothing that could cause this level of pain and problems.
A few months ago i was refered to neurology, where the doctor told me i either have MS or fibro. A brain scan came back clear, so off to the rheumatologist i went. The doctor was just horrible, and i have spent most of the week crying over his cruel comments. He dismissed most of my symptoms, said i didnt have fibro (completely ignoring the recommendation of the neurologist). He took blood regardless, which again came back all clear, and then said "just get on with your life" like i havent been trying to do that for 6 friggin years!!!! he checked 3 pressure points, two were very painful, one wasn't and from that he said not fibro, wouldnt check any more points. nothing.
I have to be honest, i was convinced i had ms, and didnt think it was fibro for quite a while, but to be told there is absolutely nothing wrong with me other than "a bit of a sore neck" has completely crushed me. Its not that i want fibro, or any other illness, but when i am in constant agony, to be told theres nothing wrong is pretty devastating. This means, no help, no new treatment, no understanding.
I had to stop work a year ago, and i am desperate to feel somewhere close to normal, hopefully start working again, but without a doctor to listen i am so stuck.
Can anyone help me. Let me know how you went about getting diagnosed, if it is necessary to have the pressure points, or what your advice for me to do next. I am very close to giving up altogether with doctors, i cant face seeing another one for a while at least. Its just soul destroying to be treated like you are making it all up
please help x
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fibroinsd responded:
Wow...so sorry for all you have been through...and yet, your situation isn't totally unusual...others have dealt with crummy docs...

I was "lucky"...I went into my reg doc, because I was getting so that I could hardly get out of bed in the morning...and she sent me to a rhumatologist that confirmed the dx...

My suggestion would be to call around to rhumatologists offices and ask if they treat fibro...and maybe deal with it that way..it sounds like you could very well be in among our group here..although I am not a medical person.

There are some things you can do to help yourself without the need of a doctor...read the section called resources and tips in the right side...Look for the post called Member Toolbox..started by Nancy B...just some helpful ideas.

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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booch007 responded:
jmbr,

I can feel the anguish you are speaking of. I also heard the same "all is negative" and I don't know....., I just kept trying a new MD. I saw 9 dostors before the story and issues clicked with an MD.

The problem with this delay is that you are not getting treatment and the chonic pain affect on the body is taking place. I kept hearing "You are depressed"...if you knew me, I am not a depressed person but I was LOW from all the pain and demeaning appointments I went on. I wish I had tried an antideoressant, in knowing now that my brain chemistry will change with chronic pain. I might have had some relief earlier.

You need to meet your champion physician. You need to have our exam for tender points. I see neurology for my issues, can you go back to them?

I am so greatful for the myofascial arm of neurology who gives me trigger point injections. My neurologist is attached to a large teaching medical center. Maybe that would help too.

When I arrived in neurology I was still undiagnosed and using only Motrin (alot) and hot paks, Valium at night for muscle spasm and need to sleep better. The first neurologist was always looking for a brain tumor. (Now in saying that I learned from a great book... that if you go to a MD who has a screwdriver as a tool you have to have a screw for a problem....If it is a nail...you have to find the guy with the hammer...)

I know that sounds crazy but it was so true, they all have focus windows. I was valued by that neuro as I had worked with them, but it wasn't until the MD with the right knowledge showed up in their office from Boston that I found out what I had. She knew all the issues. The Medical Book being Dr Travelle and Simmons, Myofascial Trigger Point Manual. I bought her book.

I bought then the FM and Chronic Myofascial Pain, a survival manual by Dr Devin Starlanyl. I got these on Amazon.com.
I use this to help me learn what I can do for me, but I also use this to talk to the MD with where my isues are.

The hardest part of this disease is still getting diagnosed, along with the MD find. Then the trial and error of meds that can be quick or take a year to get right. With non medical changes to your life to accomodate the disabilities you find, and what are your tools to be better. What are your triggers that make you worse. This learning curve is priceless.

It is > 10 years now and alot has happened to me. Alot of fighting this and learneing has happened too.

I hope for you to return to neurology and ask for a myofascial MD. Who deals with strokes and botox injections for muscle dysfunction post. A referral to a collegue who can help you. Sounds like the one you saw, sees it....but don't have the tool you need.

I so wish you so much luck. I wish there was a magic list to say...oh your state?....here is the guy taking care of it there. There are so many of us that are dysfunctional and in need.


Get educated but mostly be sure you have this problem. You need to have certain criteria to be labeled FM. If this is the diagnosis, come back and stay here as this page and fmily offer support to you to help tune you better. To help get you tools to use to correct what is happening in the now.

We talk of Vitamin D levels, Hydration and eating well for your body. Pacing and rest, hot paks and we are all different at all different stages of disrepair.

I am also a neck...it all stems from an injury from the neck and it is trying to involve all of the body.

Again, Best of luck in this.

Nancy B
 
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jmbr84 replied to booch007's response:
thank you both for your replies, it means a lot. I honestly don't know for sure if I have FM, all I know is that there is something wrong with me, and with every test coming back negative, and widespread chronic pain, it does sound likely. Apparently my vitamin D levels have been really really low for years, no one told me this until a week ago, obviously the docs around here don't care much about the patients. I have decided I need a little break from it all. I'm going to give myself a few weeks, maybe a month and then go back to my GP and try again. I can't be left like this, it's cruel to leave a person in complete agony and not offer any support or help. I guess I need to develop some tougher skin if I am going to survive the diagnosis process.
You advice and kind words mean a lot to me, thank you
 
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dollbug replied to jmbr84's response:
Hello jmbr and welcome.....it is NOT that the doctors don't care about us FMers...most of them just do NOT know what to do to help us. Low Vitamin D......not sure that a lot of doctors understand this *issue* to even know what to tell us to do about it. But I do know that low vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. Getting your Vitamin D level back up and keeping it within the *normal range* is really important. I am thinking though that doing this is really hard for a lot of people. I know that it took me over a year for me to get mine back up to the low end of the range. (I don't think I would have done this without me deciding how much to take as well) I do suggest that you do your own research about this and decide what you need to do as well.


The only way doctors can know for sure that what we are dealing with is to rule out all of the illnesses which it might be and then do the pressure point test to see if we *fit* having FM....there is a blood test which is new but it is quite expensive (over $700 and insurance companies will not cover them).


I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as I am sure you will find some good *tools* that might help you, whether or not you have FM.


I would also suggest that you try to find a doctor who actually *treats and understands this illness*....it always pays to get a second opinion anyway.


Good luck. I hope you find something soon that will help you cope better. It does take time and effort to figure this all out.




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

 
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jmbr84 replied to dollbug's response:
hi and thank you for your reply. i just recently found out that my vitamin d is very low, and has been for the last 3 years. i asked the doctor why no one ever told me, and he replied that not many doctors think it was important, himself included. Don't really understand that response, but i'm on supplements now so hopefully that will start to raise the levels in my system. I have decided that I will go and ask my doctor for a second opinion, I am entitled to one, and hopefully I can get one that specialises in FM, as I seem to fit it quite well. Also I have been tested for every other illness that exists, all coming back clear.
I dont doubt that there are wonderful doctors out there that help FM sufferers, or help anyone for that matter, unfortunately I have not met one yet.
I have heard about the blood test for FM, it isn't available in my country (I'm English). America is definitely ahead of us in the medical developments, our NHS seems to be in the business of saving money, not helping people lately. Its very sad, I do wish I could afford to go private.
I can't thank you enough for all your advice and lovely words, sometimes it just helps to vent to people who feel like I do.
Jo x
 
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dollbug replied to jmbr84's response:
Hello again jmbr....MiMi in NC. I just wanted to comment on your doctor's response about Vitamin D. My DH is a cancer survivor and his doctor told me that the *blood work tells doctor a lot. I think that *ANYTHING* that is not *within the normal range* SHOULD BE REVEALED TO US, the patients. I also think it is sad that doctors decide what is or is NOT important issues for us to know about. We go to these people seeking their help.....the doctors then do all sorts of tests to figure out what is going on with us.....so why would they not tell us the results of the tests that they do on us. (IF it was not important, then exactly WHY did they do it to begin with?).....it makes NO SENSE.


With today's modern technology, most people can get on the internet and do their own research. We only need the doctors to either confirm what we have figured out. Doctors need to understand that we, the patients, know how we feel and most of us know when there is something wrong with us.....we just have to have the tests to rule out what it may or may NOT be.


You are so right.....every patient deserves a 2nd opinion, especially if the doctor is not sure of what he is telling you about your health. It certainly pays to be thorough.


We, FMers, know and understand exactly how you feel.


Take care and good luck. Let us know how things go.




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

 
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booch007 replied to dollbug's response:
What I find amazing is that they drew it, as it is not in the norm of panels we take. BUT then chose to ignore it.

Mine was 12 and now is 60 with repletion and 2,000IU's a day!! wooppee. Again a part of the many pieces that can help you to be better.

Nancy B


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