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annamarrs posted:
Hi all! my name is Anna and I am in the processes of doing the "rule out" tests for FM. I am becoming so incredibly frustrated with the whole process. Every time I have a flare up I think to myself, when will they diagnose me already!! Why isn't is so plainly obvious?!?! But then I have a good day where I feel OK and I think, maybe it is all in my head. It is frustrating to see the answer to why every thing is happening, my full body pain, joint pain, stomach issues, pseudo bladder infections, fatigue, lack of focus, mood changes. Then if I tell anyone what is going on its like the look I get is, so you have a medical term for lazy? Although as we all know its very hard to do anything when you feel like every thing hurts.

I work as a Dietary Director for a SNF. Which means that once a week I am responsible for putting away a $2500 order of frozen, cold, and dry foods ranging from 50# of carrots to 50# of rice and boxes of #10 cans. When you hands, wrists, and fingers are hurting so bad that you can barely focus on anything, it is pretty hard to life even the smallest box.

I also recently discovered that the "genetic joint issue" my surgeons at Stanford University told me I had and did surgery on both wrists for is actually called Benign Joint Mobility Syndrome. Its even better when your told you have something and not given a name of it...had I know this I would have researched it and not thought that I was just a freak of nature, but found out that multiple people have it and end up with....wait for it....FM!! YAY....

Anyway, I guess what I need is to know I'm not alone...I am not crazy! That when I wake up in the middle of the night with my hands throbbing or my hips throbbing its real. When I get random shooting pains through my knees, thighs, and sides, its actually because its happening.

What do I do in the mean time? Does anyone have suggestions for getting through this period of grey area testing?
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missist responded:
Hi annamarrs!
I don't think I had the same kind of gray period. It was about 3 years from the first time I showed up at drs office with pain in shoulder after an injury at work (which I now think was a neck injury that cuased the shoulder pain--like whiplash maybe) Anyhow after that-- it was 3 years before I was told I had fibro--which I'd never heard of back in 88. The pain in one shoulder became both/ then moved to hips, legs, feet, ...etc.. All over body misery; asthma; then ibs for a while, allergies to almost everything but 'just a little' LOL .(allergist was stunned)

So I had a few tests pretty quick for lupus and RA I think--and was immediately told it was Fibromyalgia and handed a tri-fold pamphlet and told it might get better at menopause time (I was just 30 then) Not much info.

I guess I wouldn't be too much in a hurry to be DX'd with this. And it does sound like maybe your doc thinks something else may be involved--which It is good to find out.

If you have fibro it will not take away those 'looks' from people. They will think what they want -and Fibro is not something many people have much respect for.

meanwhile-- think about finding a different job-- which I know sounds harsh. I worked at a nursing home when I got mine and Dr told me outright to find a different job. Which it did not take me long to figure out.

Hauling heavy things in the cold is not going to work with fibro if you have it. I literally get hives from cold (but I don't know if that is fibro--it might be)

Wear wrist supports in the meantime and put some oven mitts over them-cuz regular mittens won't work with the wrist supports. (expect to be looked at even more LOL)

Or--there are little elastic wrist supports too that you could wear under gloves or mittens. I have some on right now as I type.

You're definitely NOT alone btw-- and I'm sure you'll get some great advice very soon from others here-- this is a very helpful community. God bless!
Mary
 
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dollbug responded:
Hello Anna and welcome. MiMi in NC. Sorry you are dealing with so much right now. It is the pits when doctors do not know exactly what is going on with us. They have to rule out other illnesses though first. I can assure you though that we are NOT LAZY OR CRAZY....that our pain is indeed real.


I can not even imagine having to work with cold and heavy items as well. I hope that perhaps you can find something else to do. Are there any other jobs with the company you are with that perhaps you might inquire about?


I have also had surgeries on both wrists. I have actually had 7....2 of which was repairing each wrist from where I fell outside and broke them. (not at the same time, thank goodness). The rest was for carpal tunnel problems.


I think that sometimes we do get FM from having some sort of health trauma....such as surgery. But I do not think this is the only thing which causes FM. I do know that when I first got sick I had my first left hand surgery about 3 weeks before.


I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* . I am sure you will find some *tools to try* that perhaps you have not thought of that just might help you cope better.


I would also like to ask you if the doctor has checked your Vitamin D level yet. If not, then I would encourage you to be sure and ask for this test. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. It is a simple blood test BUT you must ask the doctor to do it....since it is not included in the normal bloodwork that the doctors do.


I would also be interested in knowing if the doctor checked your pressure points as well. This is one way that they have to determine if indeed you have FM.


I am sure that other FMers will check in and welcome you here. In the meantime be sure and do your own research. There is a lot of info right here on this community and of course on the internet as well.


Take care and good luck.




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

 
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booch007 responded:
Oh Anna,
We all can remember this part of our diagnosing. It is tough, worse for me too was a physician match.

You cannot be handleling #10 cans...(I own a deli as well as nursing) As director...you should do the inventory and then a STOCK BOY puts them away.......NOW!

You have documented surgery to your hands/wrists. This should be no problem. Housekeeping can assist....the kitchen staff. Be proactive here. That is not a Directors job....CHANGE IT......starting Feb 1st. Get to management. If it looks like its not going your way ask for a temoparay* assist until you figure out this medical issue. (sometimes temporary can become permanent without effort)

No wonder you are in trouble. I want you to journal your issues and in the morning if that is the worst for you, be sure to jot down the strength and quality of what you feel, as the day goes on it probably changes with meds.

Use this to find triggers for trouble. Dr P here taught us, no repetative movements.......KEEP YOU ARMS HOME. That was big for me. I cannot work above my head or outstretched. He said keep the elbows in toward the body. priceless for me.

I just crossed this line and I needed a massage yesterday and I had a headache to start today, I screwed up lifing things to my husband in the attic! (I know better).

Look in reources to the right for the toolbox and see the fmily's ideas of help. And as I recommend to so many "FM and Chronic Myofascial Pain, a suvival manual. Written by Dr Devin Starlanyl. Is is excellent to teach you about your body.

Some things we all sem to share, yet we are all so different.
IBS and Irritable Bladder is another. Crazy the things that can go wrong with the body.

Glad you found the site and use it to help the journey, there is so much here on just the site without even using the patients that are so ready to help.

Use the search this community for dr Pelligrino or pellegrino and see all he gave us. I copy and pasted alot of his posts to a file so i have them forever to lean on. Priceless....

Good luck, Nancy B
 
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missist replied to booch007's response:
Nancy is right about the hands/arms thing. I was told back when I was new to fibro that just because of my neck issue back then (which didn't get better in 30 years. LOL) I should never be painting or wall papering over my head, and the same thing--keep your arms home. Which I even get fatigued driving, holding a book (use kindle or read off pc) gotta watch your body mechanics or you'll really be sorry.
Mary
 
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annamarrs replied to dollbug's response:
MiMi,
I am getting a full blood nutritional analysis work up. He wants to rule out any deficiencies as well. But I mentioned the pressure point thing to him. He just glared at me. I said that I read it was the most efficient way to diagnose FM. I told him that I looked up the points online and pressed on them myself just to see how it felt. Since there would be no point in even mentioning this whole idea if none of them were painful. He was like..hmm let me guess...they hurt? I said yes actually they were extremely painful areas to touch. I even noticed that some small touching from my kids or husband or the dogs is just horribly painful. He just did the mmmhmmm kind of thing and moved on. I just sat there thinking..ok so obviously YOU have NO IDEA what these areas are!! I have an appointment with another Dr who has known me for a long time on Tuesday. I plan on discussing all of this with her and seeing if she is willing to get things moving. Its not that I "want" it to be FM. Its that I just really think it is, and I feel like the longer it takes to get it diagnosed, the worse and worse I am going to feel without getting the correct medication.

Anna
 
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annamarrs replied to missist's response:
Nancy, Mary,
You guys are so right!
I decided last week that I needed to make changes regardless of my diagnosis. So I stopped putting the order away. I had a talk with my assistant and told him what was going on with me. He was very sympathetic. I also had a long talk with my husband and he has started asking me how I am feeling before asking me to do work around the house. I also decided keeping up on minor cleaning keeps the deep cleaning at bay. So major changes are going to have to take place. Its really hard when you have a 2 year old who wants "up" all the time and my hands are so weak that like Mary said as well, I can't even hold my Kindle for a period of time. In addition my hands freeze around the steering wheel of the car when driving my 7.5 miles to work. I just need to diagnosis in order to make anything official at work.

Anna
 
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dollbug replied to annamarrs's response:
Hello Anna. Well....it actually sounds like your doctor does NOT HAVE A CLUE about FM. I do hope that you find a good doctor who actually understands and treats the wrath of the dragon, aka FM. Otherwise, it might be difficult for you to move forward with tools that might work. There are lots of doctors who still do not even believe that FM exists. So try to ask when you are looking for a good doctor before you even make an appointment. This way hopefully you will not be wasting your time.


It is so hard to move forward especially not knowing exactly what is going on with your health. I do encourage you though to learn all you can about FM. The more you know the more you will figure out how to cope better. Everything is a process which does take time and effort. There are no quick fixes or magic pills which *cure* it...actually there is NO cure. We, FMers, must learn all we can about it and then find what will work for us. We are all different and what works for one may or may not work for another.


Hang in there and I am sure you will get the information that you need.


Take care and good luck.




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

 
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mnjeepguy responded:
Not being able to do what I used to was the hardest thing for me. These ladies are right. We have to adjust things in our lives or we will put ourselves in a bad place. Pacing things is another key to dealing with any illness. Know your limits and don't cross them. This is all easier said than done, but keep it in your mind at all times and it will help. Welcome to this great support group.


Cory
 
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franr responded:
Hi Anna


So sorry you are experiencing so many symptoms .Unfortunely we all have them and they vary from patient to patient .Please believe you are not alone and you have come to the right place for support and information .Many of us have had experiences with doctors who did not believe us. They cannot understand how we have so many different symptoms .But rest assure they are real and you are not crazy. Hopefully you can find a sympathetic MD you has experienced treated fibo patients. You can purchase a couple of books written by Dr Devin Stayland .She to has fibromyalgia .I have read and reread her books many times. She details all the symptoms ,problems and possible treatments we all experience. I Hope you are able to get a diagnosis as soon as possible. So you can start a course of treatment that is right for you. Keep us updated and good luck...Fran R
 
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annamarrs replied to dollbug's response:
MiMi,
You are EXACTLY RIGHT!! Its so funny that you commented about my Doc because I just got off the phone with my mom, who happens to be my doc's receptionist and I told her I was tired of feeling like I was being thrown aside become I'm some crazy person. I have an appointment tomorrow with one of the old PAs that used to be at her office. She is known all over the area for her bedside manner. I have seen her for a long time and plan to discuss it all with her. I am SURE that she will believe me and support me the way a Dr should support their patients. The problem is that she is very hard to get in with because she is so well loved in the area. I have never looked forward to a Dr appointment so much before!! I think today was just the last straw when the weather here in Southern California went from Sunny to wet and stormy. I have always loved the rain...but yesterday and today were so incredibly painful, it made me wonder how anyone could have FM and live anywhere then the Keys or Bahamas!! LOL Besides the fact that I shiver from freezing down to my bones in 80 degrees much less in 50 degrees. And for anyone who works in a kitchen knows that there is not heating elements unless you climb into the oven. So with that said I had to come home early today to take a hot shower, #1 to get warm for the first time in 2 days, and #2 in order to differ the pain radiating throughout my body for at least the 20 minutes I was able to keep the hot water running...That's when I got on the phone with my mom and said THIS IS ENOUGH!!! I refuse to be treated like this from someone I am paying to take care of me...and that was that. So tomorrow hopefully I will either be in line for more testing (which means answers) or I will have those answers and she will just diagnose me then and there!
We shall see. I will keep you all posted.

And thank you everyone for the support. This was such a great place to join. Truly you are all wonderful!!

-Anna
 
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annamarrs replied to mnjeepguy's response:
This is the truth Cory. I was thinking about all the things I was able to do just a little over a year ago. I used to run, hike, bike ride, carry my children, help when moving furniture. So many things that are not even an option now. Now even my kids climbing on my at the wrong time is excruciating. I don't want them to grow up remembering me that way. Even not knowing for sure if this is FM, I have learned from the FM books how to adjust my life to accommodate the way I work or handle my house hold differently than I did a year ago. I can't do those things anymore. I can't drink any alcohol because one glass makes my whole body feel like I got hit by a truck, and I didn't even get the fun if being tipsy! I can't go dancing which I LOVE to do, because I feel like I ran a marathon the next day. It sucks when you feel like your body is giving up and your not done yet. I'm only 29. I turn 30 on the 26th of this month and I have so much life left to live. I'm so not done yet!
 
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mnjeepguy replied to annamarrs's response:
Hang in there and never give up! I am almost 39 but always ran around like a twenty year old until just a few years ago. I bikes, snowmobiled, hiked for miles, laid under cars wrenching on them all day, sometimes after working 12's. Now I work less and am shot after my 8hr day. I can walk a few miles but it isn't easy many days. I sold the snowmobiles because my body can't take it. I sold some of my bikes because the position was no longer comfortable. Change is not easy, but necessary change does not have to be the end of the world. We will adapt an concur.


Cory
 
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mnjeepguy replied to mnjeepguy's response:
conquer!


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