New Member

Discussion in 'Fibromyalgia Main Forum' started by larryfinelegal, Sep 11, 2006.

  1. larryfinelegal

    larryfinelegal New Member

    Hi Everyone.

    My name is Larry. I am 57 years old and normally in good health and shape. I have had strange symtpoms for over 27 years. When I was 30 I came down with a strange malady. Chills, swollen glands, muscle soreness and weakness in the arms and legs, headaches, etc. The doctors took a million tests and found nothing. After thinking I was dying it disappeared in about 4 months.

    10 years later, it suddenly reoccurred. This time, I had all the above, but was very tired as well. More tests, nothing. They said I had mono, but could not be sure. After 4 months this disappeared as well. All this caused super anxiety and panic.

    I was fine for 14 years, when I got sick in Mexico. Within 2 weeks from this stomach problem, my old symptoms came back. They lasted only 9 weeks and I felt better after that.

    However, 6 months later, after some stress, I got the symptoms back again. Again, new tests, nothing. This time after a couple of months, my doctor, who does not believe in CFS, put me on anti-depressants and tranquilizers. Well, I could not tolerate the A/Ds and went off them immediately. The tranquilizers created another problem. I ended up being addicted to them and in order to get better, a shrink put me on an even higher dose. Well, I got off them as soon as I could, but I didn't realize the withdrawals symptoms were long and protracted. In the meantime, my CFS symptoms had gone away. I was so doped up I didn't know when.

    Well, about 2 months ago, I had a lot of stress at work and some real medical scares. I was starting to feel the arms and legs were getting those old tingling, burning, aching sensations back. I ignored them. However, the past 2 weeks, all my symptoms are back, i.e., the headaches, chills, arms and legs are sickly weak and achy. I took blood tests the past month and all are normal. Story of my life.

    I have never had any support from anyone on this illness. My doctor and spouse thinks I am just crazy. I know this is real.

    I have never spoken to anyone or even know anyone who has CFS. I was just wondering if 1) does it sound like I have CFS; and 2) I would love to talk to people on how they handle this horrible situation.

    Thanks for taking the time to read this.

  2. rockgor

    rockgor Well-Known Member

    Welcome to the board.

    Many people report a sense of relief when they find this board. At last they can discuss their problems w/ people who understand and who have the same or similar health problems.

    Lots of nice people here who will be glad to share experiences, info, jokes, etc.

    You used short paragraphs in your post. Many people will appreciate that as they have trouble reading long paragraphs.

    Check out the library (in purple banner above) and keep coming back to the board.
  3. StephieBee

    StephieBee New Member

    I am so sorry to hear about all of the problems you are having. Especially finding a doc that believes you, and the fact your spouse doesnt believe you either.

    Welcome to the board. I dont have many people to talk to either so I come here. I can vent, talk, laugh or just about anything here and no one complains. Everyone here listens. You will love it here.

  4. Lendy5

    Lendy5 New Member

    Welcome to the Board!

    Glad you found us and I am sure you will enjoy it here.

    You will meet alot of fellow sufferers here and you will make many friends that can relate.

    You can do many different types of searches by using the search feature at the upper left corner of the page. Maybe you can print some information on CFS for your spouse to read.

    Take Care and nice to meet you.

  5. m5shelly

    m5shelly New Member

    Hang in there... for years I didn't have anyone believe me, about the pain especially. I am lucky enough to have a spouse that actually knows I am in pain, and works with me through the tough times. It took years for him to understand, but he does now.

    You can find a doc that understands FM, and will work with you instead of against you. Just use some of the search engines on the web for finding docs that treat FM.

    Good luck. I know how you feel. I went through the same thing when the spouse wasn't there for me during the painful times, and I didn't have a doc that understood FM. Again, hang in there, and take the advise here on this forum for things you can do for yourself without a doc or Rx.

  6. TerryS

    TerryS Member

    Do you know what kind of lab work your doc ran??? If he didn't run the appopriate tests, he'd never know if you had mono, cytomegalovirus, etc.

    I had cytomegalovirus in 2002 and sounds A LOT like what you might have had in the past. I never fully recovered (energy wise). In the past year, I've had a lot of struggles with fatigue and extremity aches/pains...and now sharper shooting pains. Apparently the Epstein Barr panel (marker for mono and CMV) shows chronic/reactivated disease. For now, I am on a medical leave from work...too exhausted to do much of anything but just lie here all day. (Got to love my laptop!!!)

    My ENT thinks I have CFS. I've had a lot of labs drawn, and I'm seeing a neurologist this week and a rheumatologist next week. Hope to get a formal diagnosis soon.

    Can you see a rheumatologist without having to get a referral? They're the ones (I think) that will have the answers for you. I know that MY PCP doesn't have a clue what is going on!

    Good luck! Keep us posted.

  7. larryfinelegal

    larryfinelegal New Member

    Thanks everyone for responding so quickly.

    I have had many test in the past. Cytomegalic virus, nothing. My mono and epstein barr titres are always high, but I never really had mono.

    As to a rhumatologist, I went to see one 2 years ago and he ran a bunch of tests and found nothing.

    It is extremely frustrating to feel so lousy all the time and the doctors just look at you. My doctor, who I like, even suggested a couple of weeks ago I find another doctor. Nice, huh?

    I think this board will really help. Obviously, the only people who understand this constant discomfort are people who suffer, as I.

    I guess I am lucky in that my symptoms in the past always have gone away. I am afraid that one day they might not.

    I know no one here is a doctor, but does my recurring symptoms sound like CFS?


  8. TerryS

    TerryS Member

    I also have the tingling, burning, aching in the arms and legs. BUT I don't have a definite diagnosis yet.

    From what I've read, sounds like it could be CFS.

  9. shar6710

    shar6710 New Member

    I too would have total remissions for short periods but not over as many years as you. Now I did have a horrible bowel problem had diarrhea for at least a year. That was in college, lost a lot of weight, but they never figured out what it was and I continued to have less severe problems for about ten years.

    My first suggestion is to start looking for a new doctor NOW. There are doctors out there who believe in CFS. Do not let your current doctor's ignorance push you into doubting yourself.

    You might try filling out your profile or just telling everyone what area you live in. Maybe someone knows of a good doc in your area.

    Good Luck,
  10. Bren2135

    Bren2135 New Member

    Hi Larry,

    Welcome! I'm pretty new here too, and find this place warm, comforting, and informative.

    I have FM, not CFS, and in the early years, had all the symptoms you mentioned. Now they come and go, along with many others.

    I think it's very important that you find another doctor immediately, one who treats CFS and FM, and especially, one who believes in YOU. It's definitely an energy drain, trying to convince someone you're sick, when they think it's all in your head.

    (My first doctor immediately sent me to see a shrink, too, and ohboy, would I like to see THAT report!! She dumped me soon after, and did me a great big favor, in the long run!)

    Hang in there, you're not alone..

  11. Pennygirl2

    Pennygirl2 New Member

    Hi Larry FIRST I DEFINITELY THINK YOU HAVE CFS, AND PROBABLY BUT NOT definitely FM. The Chills, swollen glands, mono can be the start in a subset of people like me, Larry, welcome to this site. Many Many friendly, supportive people. Not knowing really does make you crazy and very insecure. It takes most of us a long time to find peace and acceptance with this DD (we call it -Darn Disease or Damn Disease). But there seems to be an overlap with some people having only CFS, only FM or both. All the FM people go to a rheumatologist, but although I have FM (got it some years after CFS), I do not see a rheumatologist. I don't have a good doctor, but you might try to locate a specialist in CFS. I don't know how myself, but just an FYI, I know you are not crazy and I REALLY think you have CFS.
  12. larryfinelegal

    larryfinelegal New Member

    Thanks again everyone.

    The people here are sure nice and understanding. I guess the type of people afflicted are nice ones. Never heard of a bad person getting this stuff.

    Boy, today again I feel horrible. I can't even describe it except to say I have a deep achiness in my arms, legs and a sick, deep headache starting at the eyes.

    Motrin doesn't help. Nothing helps. I like to exercise, but it only makes me ache more.

    It is so depressing. Like most people, I want to do something to cure this mess, but there is nothing to do. It is very frustrating.

    I guess I will just perservere another day and hope for a better one tomorrow.

  13. code34me

    code34me New Member

    I had alot to say about the Mono thing but everyone has said what I would have said. My cardiologist does not believe in Fibromyalgia but he does in Chronic Fatigue Syndrome. My lab work from him showed high titer levels for Epstien Bar Virus and says that is what is wrong with me.

    My Ruemy says it is Fibromyalgia and alot of my other docs say so too. It is hard with these two illnesses. You have to do your own research and listen to your body and mind. Get some support (like here) and just take care of you becasue no one else can as well as you!

    Take care of you! (as I always say) Codey
  14. BlueSky555

    BlueSky555 New Member

    Hello Larry,

    A warm welcome to the board. I am so sorry about what you are going through. I'm sure you'll get the support you need here on the board.

  15. Redwillow

    Redwillow New Member

    You have found a very supportive place.

    hugs Marion (Redwillow)
  16. kirschbaum26

    kirschbaum26 New Member

    Dear Larry:

    Welcome. I am in South LA county. You will most likely get lots of good ideas from people on this board. They are very intelligent, caring and sharing people. Yes, most of them have gone through a lot of tough times. Some have improved. Some can work full time, or part time, or get out of bed once in a while. There are all types here, and what I think you will find is that not one thing works for everyone, but if you are willing to take the time to try out some of the things that do bring some relief to some of us, you might find something that works for you.

    If you do not have a supportive PCP, you might want to find a new one. If you have any inflammation, swelling, redness, soreness, in any joints you might want to revisit a rheumatologist. I know you said you saw one some time ago, but our symptoms change over the hours, days, weeks, months, and years. Sometimes our test results change as well. Just an idea.

    There are also other FMS/CFS support sites as well as foundations that work to educate and improve the lives of those who have these illnesses.

    Welcome, and hope you find some support here.

    Oh, one more thing, you are most likely NOT crazy. None of us are.


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