I need some help.

Discussion in 'Fibromyalgia Main Forum' started by JPbaker, Nov 16, 2005.

  1. JPbaker

    JPbaker New Member

    My life is falling apart from the inside out, and there seems to be nothing I can do about it. I can not control what is happening to me and my family is falling apart. I have no idea if this forum is active, and I have no idea if im even in the right spot.

    I stopped working In april of 2005 from my carreer. I had no choice. I had fought flu like symptoms for what seems like an eternity, and I could deal wih it. Along with the constant flu like symptoms, my skin and underlying muscles have for many years turned deep red in many places on my body, and constantly itch. Not a slight Itch, but to the point that I use something hard(such as a fork or a Key) to try to relieve the Itch. This comes and goes, and when present seems to move (on one finger and my palm, then on next finger and wrist, then on my head and feet, etc. It cycles over my body). When the Itch is prevalent, so is this thing that I can't explainn but to say it feels like I am dying of the Flu.

    Then it goes away for awhile, and years ago I thought that it was in fact that I caught an extreme Number of Flu's and colds. I dealt with these symptoms, although People always looked at me as "the guy that always calls off sick"

    In April 2005 I went to work Normally. Painting of the inside of a controlled access building was required (not my normal Job - I was in corrections) so I volunteered. Seemed to me it would be a nice break from my regular workday. I worked hard to get it done as much as possible so the next shift would have less to worry about. At the end of the day I could barely walk - seemed to me to be abnormal - but i didn't think twice of it. That was my last day on what was a promising carreer. I spent three weeks trying to recover from from that one night painting. I could walk, but my muscles felt like jelly, and I stepped slowly as my Knees shot lightning bolts of pain through my knee's on every step( not the frst time with this pain, I had felt it before, after running).

    I started a Loooong and worthless voyage to doctors to find out what my problem was. My primary care physician at first ran all of the appropriate tests, checking all my labs finely for everything possible. I was sent to an allergy specialist and had a few allergies, but as he put it "nothing at all that explains your symptoms". Then my primary care physician started to lose interest in the matter, after exhausting all of the tests and labs. He finally sent me to a Rheaumotoligist. This appointment was the most miserable experience in my life. He told me that he believed that I had Fibromyalgia after a few minutes of chart reading and deliberation. He then proceeded to run me out of his office, and did not give me a diagnosis. He told me a Diagnosis would be futile, and that I should learn to live with my problems. I asked about treatment, and he told me to get back with my Pcp.

    I scheduled an Appointment with my Pcp - and he called back and cancelled, without setting a further date. I tried and tried to set another appointment and when I finally got one, he saw me - 4 hours late for my 8am apointment. i waited there all day. When he saw me , he would not look in my eyes, seemed very distracted and told me that Fibromyalgia did not exist, That I was probably a lazy person with stress.

    I did not go back to that doctor. In fact, I gave up on doctors altogether. I waited until I was a little better and got another job - I worked it for 5 1/2 months until I could not go any more. I then got another job, that lasted all of a week. I work a few days and then I am so weak iI can barely walk or stay awake. Whats worse, my wife is furious. She also does not believe that I am sick (Although the Deep red Itchy bruising on my body makes her believe I have allergies- which the allergy specialist says is in no way related to allergies). She is on the verge of leaving me, we are in the preliminary stages of losing everything we have worked for as we can no longer pay all of our bills, and the only thing I can think of doing is getting another job.

    But I feel as if i have the Flu again, and I cannot seem to get up and go anywhere much less to find a job that will save us from the position we are in. My muscles are weak, I feel like sleeping constantly, My head spins with nausea, and I am so depressed that I havent a clue as to what next.

    this story of my miserable wrecked life is for one reason, I ask here because I have no where else to go. Is what ive explained anything close to Fibromyalgia, and if so what can I do? Excersize makes it worse (way worse, even walking now makes me fell horrible). And if so, What next?
    Please god what next?
  2. elastigirl

    elastigirl New Member

    I just want to say -- you are in the right place. You are now among friends.

    I read your post with wonder that your wife could not believe you when she sees what condition you are in now. We always hope the one closest to us will understand, but they don't always get it.

    I remember freezing every night when I lived with my ex. He'd go to bed in next to nothing, and I don a shirt, two sweaters, a pair of jeans, 3 pairs of socks and 3 (yes, 3 robes!) That still wasn't enough. I had to put on his ski-mask style hat and wrap two scarves around my neck.

    He always ignored me. Then one morning, he actually looked at me and said, "Are you cold?" ?@#! Well, I certainly was, because my blood just stopped cold when he asked. I mean, can you imagine what I looked like? Heck, I scared my baby.

    But he didn't get that I was sick. It was 'all in my head.'

    I honestly don't know how to bring you comfort, but I hope that I can bring you a little ~hope~. This board has been a catalyst for many us to restart trying to treat what is wrong with us. Even if you have given up hope, there are doctors out there who believe. There are new treatments and ideas coming out everyday.

    I'm personally down to flannel pajamas and 2 pairs of socks again. We're not expecting miracles. All we want is something closer to 'normal,' and I hope you get your share of something closer to 'normal' soon.

    We believe you.
  3. fivesue

    fivesue New Member

    the Roller Coaster thread....


    Sue
  4. laura81655

    laura81655 New Member

    I don't think you have Fibromyalgia. You have to keep searching for a doctor who will listen to you.

    Have you been tested for Polymyalgia Rheumatica? or

    Inflammatory fascitis/myositis? I believe one of these is more common in men. Look these up on the net.

    I saw a Neurologist in Scottsdale AZ. who is with the Neuromuscular Center Division of Neurological Institute.

    Let me know if you want any other info.

    Laura
  5. Bailey-smom

    Bailey-smom New Member

    You have come to the right place! This board is very active:)

    You are not the only man that comes here & hopefully others will find your post & will also give you some support & advice.

    It sounds to me like you, like so many others, have struck out in the doctor department. You need to try to find a good rheumatologist or primary that can start to help you before your life gets any more out of hand. Others on the board have had problems with drs pushing them to the side because they say FM is all in your head but we know different and so do many other drs. Do not feel like you have gone crazy because that is not so.

    The flu like body aches are normal with FM and you feel like sleeping all the time because we do not get enough of the right kind of sleep when we do sleep. There are others here who can better explain all the details!

    Keep the lines of communication open with your wife & do not hesitate to bring her here – she can look over the whole site & ask questions on the board if she would like as well.

    I wish you well!

    Kelly


  6. raccoonmom

    raccoonmom New Member

    Dear JP, I hardly know where to start to say how awful I feel for you. You are living in Hell!
    First, find new doctors!!! Yours suck!!! and that's being kind for the way they have treated you.

    I don't know enough about shingles, but that could be part of the itchy, painful places. I would have to look it up and research what all the associated symptoms are. But there have been members on this board that are familiar with them and suffer with it.

    You certainly sound to have fibro or chronic fatigue or both.

    Do you live close to any large city? You really need to find a good neurologist fast.

    You should be treated for these symptoms and not be insulted to be told it's in your head and just live with it.

    I haven't been to this board for a very long time since I am doing better, finally after 14 years of torture.

    It makes it so much worse when you are the breadwinner and your spouse doesn't support your feelings. That hurts as much as the illness and stress of any kind makes us hurt more. Can your wife be of financial help?

    If you say where abouts you live then someone on here can tell you of a doctor in your area or at least accesible.

    Please don't give up hope and keep us posted so we may try to help. So many people have lost everything and everyone from this illness.

    Take care.
  7. abbylee

    abbylee New Member

    So I'm at a loss about that. Your other symptoms could be fibromyalgia.

    Click the "doctor referral" at the top and see if there is a doc in your area, or make an appointment at the nearest FFC Center. You should be able to get help from either/both.

    Good luck to you.

    abbylee
  8. sues1

    sues1 New Member

    As I read your posting I thought.......HE HAS CFIDS....and maybe Fibromyalgia also. I have both.

    I am lucky to have loving hubby and family that understand.

    But I can see where someone does not believe it, at one point I did not. It was stupid. Made no sense. I kept trying to kick myself in the back side and snap out of it! I had one Dr. that threw a book across the room and it bounced off the wall......he yelled, "There is no such thing, it is a garbage can Syndrome (another Dr. had diagnoised me with it), and you American's just don't want to work". I left in tears, and could not talk to him, I was limb and worn out. I could not defend myself at that minute.

    I even went to check on my mental health and really worked on any issues I'd had from birth forward. I wanted to be better! I was told that there was no reason that I was doing it to myself, that I was healthy mentally.

    After MUCH seraching I found a support group and it was in a next town, but not far, and that helped me. I knew I was not alone. They all had the silly, crazy problems, the list is endless. None of us had gotten together before hand nor read about it, so we did not have the manual on what we were to say we felt like, etc. None of us wanted to play this role.

    Most of us were hard working and many intelligent and well educated with strong goals...before this hit. We then was reduced to being hardly able to walk and talk people. I still use the wrong words....but my family, friends and myself just learn to laugh at them. Yesterday I meant to say genealogy and said gynecology(not sure on my spelling there, fibro fog)........there is a lot of difference between family researching and a Dr. that specializes in woman's issues.

    But I guess that I am a woman that can gives grins and giggles and that is not so bad. I relax with myself and do the best I can but I do not push or get upset with myself as that makes all worse.

    You must educate the ones around you.....in the search box at the top of the postings......enter THE THEIF OF MANY LIFE'S.....read it. Print it out. Send it per email to others that you wish for them to understand. Also the SPOONS STORY....there is other such articles also.

    Well guy, we just reinvent ourselfs. We do things differently and cope the best we can. We keep trying and looking for help, but also learn that this is us at this time & we are not who we were. The song the Gambler says (on card playing)..."Know when to holdem..know when to foldem" and that is us and every day is different. We learn to go with the flow.

    Get on the phone and make phone calls to various Doctors offices and ask if he treats Fibro/Cfids and if he believes in it! Find out from people in a support group who they go to. There is some good Drs. Just have to find them!

    Call your local hospitals Public Relations office and ask if they know of a support group for such. I even called the
    Arthritis Society.

    Yesterday I told my husband that I felt like I had the world's worse flu, got ran over by a semi and made a high jump and forgot to fasten my bungee cord........and the worse pain of all was that it affects his happiness also.
    I am better today!

    Others has posted much and will be. Read all you can. Have you applied for any financial assistance or Social Security
    disability, food stamps? Try to get some help even if it is not much, it might get you through this rough bump.
    BLESSINGS

  9. sues1

    sues1 New Member

    What kind of paint were you using? Was it all outside painting that you used and you had ventilation? If you could get a hold of a can of it, it might have warnings on it!

    FIND THAT OUT.
    Maybe you need a type of Doctor that deals with chemical type of illnesses (I mean caused by chemicals we use for cleaning, etc.). I can not think of a proper name.

    But that makes sense and I could see where that could start what you have along with rash and itching and all.........

    Even if no warnings on can..try and get a label from the can to take to a doctor.......as this pinat would contain various additives......Dr. would need to know this. Mayb they have some left over paint that was used and it is stored in shed or a janitor's room or such. If none around ask them for the name and all..make sure you get it and make sure it is the same that was used by you.

    You might of had a special sensitivy to it. You need to know.


    GOOD LUCK AND LET US KNOW
    [This Message was Edited on 11/16/2005]
  10. JPbaker

    JPbaker New Member

    Well, I guess this Is a busy Place! Thank you all for your quick responses, I have been reading over the posts here and all of the information is a little overwhelming. To answer a few of the questions here:

    Laura8165 I spent a year now of Rheaumatoid tests, and nothing. I have literally had every test in this category with no results. I will investigate agian, as I am probably on my second year journey through the circus of Doctors, and I will ask to have these tests done Specific - TY =)

    Fight4acure - I am 35 yr old male, live in Phx AZ (have for many years) and I have a wonderful family that needs to understand that I am not feeling well

    Raccoonmom I definitely had the rash checked out, had a few cultures taken, was misdiagnosed as Multiformae eurthmycmia, end result -No reason they should be there ( I also get hives, with no explanation, although I havent in a year i know the hives will be back)All tests negative

    abbylee - the PcP tells me the same thing, Then my Allergist tells me it is common in CFS, then the Rheaumatoligist verified it saying that this was in fact a likely symptom of Fibromyalgia. I am just as confused and it seems that this is part of the problem, symptoms that dont add up. However, look at the post on strange symptoms here, many have the rash - exactly as I describe it. The bottoms of my feet are the worst, they burn and swell and are heat sensitive. Once I am ready with a little self education, I will reffer to a Dr. - I have to try again.

    sues1 - A very good point, but not the case. Before that painting i have had similiar symptoms, just not as bad as that day. In fact slowly but surely for ten years or more this has been an issue, and it has slowly built to what it is today. I had toxicology tests done within weeks of that day, and according to all tests I am as healthy as a 35 year old could be.

    Thank you all for posting, and more than that thank you for some true insight. I may or may not be able to stay active here, as my internet may be one thing being cut off due to financial stress (my wife believes my computer is why I dont have a job now, which is utterly wrong I would do almost anything to be working even as I type)

    After about three hours now of reading I believe that The Infamous Rheum Dr. May be right. It seems I have so much in common with all of the symptoms posted here that It couldn't be a coincidence. I guess my next step Is maybe a tiresome one - back on the Dr merry-go-round.
















  11. hopeful4

    hopeful4 New Member

    Glad you found us, sorry you're going through so much. It's so awful when our health wreaks havoc on our lives, and the lives of our loved ones, and we don't know what's exactly wrong or where to turn.

    It can be so challenging to go through this, and so frustrating when we cannot find the doctor who can help us. Most of us here have bounced from Dr. to Dr. with little results.

    I became ill suddenly 5+ years ago, went to many doctors, naturopaths, etc. This year I found the Fibromyalgia and Fatigue Centers through this message board. You may want to consider contacting them, they have about 12 centers around the country. You can read about many of our experiences at these centers by putting FFC in the search box. Or go to fibroandfatige on the web.

    Their extensive testing and diagnostics have picked up many underlying issues that have not been addressed for me elsewhere. They look at the whole picture, and you are treated with respect.

    Wishing you the best,
    Hopeful4

  12. PVLady

    PVLady New Member

    Many years before I came down with fibro, I went through two years of hives. It sounds like you are describing hives with the itching that moves around with large red areas.

    I believe what started my entire experience was exposure to pesticides and severe allergies.

    I am sure you also have multiple chemical sensitivities to go along with everything else. Are you sensitive to smells?

    I don't know what state you are in but I would contact Dr. Holtforf at the Fibro and Fatigue Center. He has clinics all over.

    You are in the right place and we will all try to help you as much as possible. Please believe you can get better, I did.

    It does not happen overnight. You did not get sick overnight, and will not get better that fast. There are doctors who will help you.

    Dr. Holtorf has a website and many members here have been treated at this clinics. At this point, you have nothing to lose.

    Please keep coming back and begin your journey to getting better.
  13. laura81655

    laura81655 New Member

    Have they ruled this out? I noticed you said you live in Phoenix. You should go see Dr.K Sivakumar, he is in Phoenix! He is affliated with the Barrow Nueromuscular Center. Wishing you the best in trying to solve this mystery.

    Laura
  14. Des2nee

    Des2nee New Member

    JP,

    Its so sad to hear yet another one who has to face the road of having to prove ones self. The board is a wonderful source of support to many, many, many of us! You are on the first leg of many hoops to jump through! Comforting I know. But, we here, for the most part have been through it.

    I wont repeat all that the others have already said. They speak wonderfully! I will however stress the need to find a supportive PCP who will support you in at least STD to begin with. I'm not sure from your posts if your wife is employed outside of the home or not. If she is not and I were you I would run my butt to the nearest local Social Services Department and see if you can get any kind of financial help. What can they do but tell you no? Or maybe what you need to do.

    One thing you may want to do is start a post seeking PCP recommendations in your area. I think that was already suggested too. Then if not before get your wife to sit down for however long she needs to read the posts here and others on the web. Have her ask any questions she may have.

    Let me state that I also had trouble with hives, rashes and deep itching, which still happens from time to time. No answers from any doctor about that but I believe its from stress/chemicals or environmental causes.

    I do hope you find some answers soon. Added stresses just seem to add to the symptom levels.

    One more thought. If money is really tight look for you County's Mental Health Services. No I'm not saying your crazy!!! But they just may be the ticket to helping you find a receptive PCP or other healthcare provider. Besides that they may just also help prove that no you are not crazy and no its not all in your head! They actually were a big help in my winning SSD benefits... Physical discomfort creates a toll on our psyche which = phsical discomfort.

    Keep us all posted!

    ~Des
  15. sues1

    sues1 New Member

    On previous posting to you I also started thinking about Lyme disease, the rash is what me think of that. I have been checked twice for it, but was not real savvy on it.

    I then saw a new posting tonight and I felt that I HAD TO get the info to you, that you might miss it.

    SEE: "If you have FM,CFS or Lyme - MUST READ
    Great article"
    It was posted on 11-17-05 @ 7:57 by Ulala

    It sure made me think of you. You are young, have a family and I want you to have the best........hope you have a long full life. Blessings