Newbie from Ohio

Discussion in 'Fibromyalgia Main Forum' started by Chris3251, Nov 26, 2006.

  1. Chris3251

    Chris3251 New Member

    Hi everyone. I'm new to this site, a friend forwarded it to me. I'm still in "the testing phase" but as of now it appears I have both fibro and CFS. It's pretty much confirmed, just a couple more tests to do. I've been in and out of the hospital, had every test done under the sun for over a year now. It wasn't until a month ago when I finally found a dr. who seems to be on the ball. Everybody else pretty much wrote me off with every lame excuse in the book, but a friend of mine guessed it months ago.

    I just recently turned 41, I'm divorced and have 2 teenage daughters. Because of medical bills and the stress involved with everything, Im in the process of selling my home before I lose it and moving back to IL where my family is. I have no family here other than my daughters, so its just me and them.

    It's been very difficult to deal with all of this w/o much of a support system or understanding. (Which is another reason why I'm moving back home). I'm super stressed trying to keep things afloat, constantly worrying about losing my job for all the time off work I've missed, and my daughters have had to grow up way faster than they should have, constantly worrying about me. It's safe to say I'm a ball of emotions right now. I've always been the in-charge type, going after a major house / yard project at warp speed, with everything I've got and I didn't stop until it was done no matter how long it took. Now if I even do just a couple of things around the house I'm zapped and that drives me INSANE. Plus I'm like in some sort of fog, even making just stupid mistakes like putting things in the oddest places. Or even stupid writing mistakes and I've always been fanatical about things like spelling or grammar.

    From a physical standpoint, I'm sooo tired all the time and of course in chronic pain, everywhere. I have a sleep study scheduled in Dec., the drs are certain that there is a sleep disorder involved which from what I understand is associated with all of this. I have high BP, RLS, I just found out I have osteo-arthritis in both hands and wrists, I have Factor V syndrome (which I've known about for about 3 yrs) and I keep getting these insane, major bacterial infections that nobody can explain and a couple other more minor medical ailments. I think I take more pill than an 80 yr old!

    And aside from feeling like I've been hit by a Mack truck 24/7, comes the whole financial aspect between hospitalizations, tests, bills, and trying to hold on to my job. I was covered under FMLA anyway for the Factor V, plus I was out on short term disability for almost 9 months because I kept landing in the hospital with bacterial infections. I just went back to work in May, so I'm out of time until I work a designated # of hours and I feel my job is in jeopardy, which I have to hold on to until I'm ready to move. Once I move, I'm going to be staying with my sister until I'm financially able to get my own place, but I don't even know how I'm going to be able to start over and not get fired due to attendance unless I find a WAH job.

    So wow...my first post here and all I've done is unload and whine...lol. I desperately need to meet people who are going through this. I don't know what to expect and I don't know how to deal with going from the full steam ahead type to where I am now. I don't even go anywhere unles I ABSOLUTELY have to. I know I'll feel better once I get relocated and have family support, but even still they aren't going through this, so I don't how to help them understand what I'm going through w/o coming off as a hypochondriac or something.

    Anyway...this is my situation...I hope to see a light at the end of the tunnel and not have it be another train for a change.
  2. your not whining, your story unfortunately sounds similar to most of us. I'm glad you at least found a good dr. There are alot of people from Ohio on the board. I hope you enjoy this board, there is alot of great info here and fantastic helpful people.
  3. shar6710

    shar6710 New Member

    I live near Mt Vernon, not far from Columbus. I also have a sister in Bellville, Illinois.

    You seem to be accepting the realities of this disease in short order and with as positive an attitude as possible. It sounds like you are trying to rid your life of future stress that would only make you more ill and that's a really smart move.

    I'm curious if you have been given anything for your RLS. Several of us here are on Mirapex and it seems to help. I too believe that I can regain much of my previous level of functioning if I can solve my sleep disturbances.

    As for your family, I don't believe that anyone who doesn't have a chronic fatiguing illness can truly understand us. If your family believes you and is willing to help that's a good start.

    Best of luck,

    Shar

  4. Chris3251

    Chris3251 New Member

    Thank you Shar. I know where Mt. Vernon is. I'm not sure where Bellville is, but I'm moving to Quincy. My oldest sister and I are very close. She and my niece pretty much convinced me its time to move back home. I fought it for quite a while until this diagnosis was confirmed and I did some DEEP soul searching. My oldest daughter lives with her b/f; however, my youngest lives with me. I was really concerned that she would get upset but she's very excited to start over, so I'm very happy with that. I just hope I can find a dr. there who is familiar with all this so I don't slip thru the cracks.

    As for accepting the realities, I can't say I'm there. I'm having a real tough time dealing with my current limitations and wondering if this is what the rest of my life holds. Plus I just don't understand what I'm dealing with. I started getting so depressed & anxious a few months ago that my dr put me on a low dose of valium.

    Right now I'm sitting here tired and frazzled, waiting to go back to the dr this afternoon, dealing with yet another infection and a stone in the salivary gland which will probably result in outpt. surgery. I had to call off all of last week and now I'm out again today. Over the past year I've been hospitalized 3 times for a variety of bacterial infections, mostly abdominal, including sepsis, now this, and nobody could ever figure it out. I don't know if its related to FS/CFS or not. (Sorry, I'm trying to learn acronyms).

    My family dr. put me on Requip for the RLS. I've been on it for maybe 3-4 months, prior to my recent diagnosis. It's actually worked very well for me. I hope the sleep studies answer more questions. I've never been one to fall asleep anywhere but my own bed but right now I could doze off standing up. Meetings or training classes at work are torture because of this and I've even dozed off while I was talking - mid sentence!

    Slowly but surely all these other ailments are adding up and sound like they're connected, but I think I'm still in a level of denial perhaps. Or probably just not understanding what its all about.

    Thank you for your response Shar. I think I've found a good place for support and hopefully I can get to a point where I can lend it myself.
  5. Chris3251

    Chris3251 New Member

    Thank you Huck, I appreciate your knowledge and encouragement. I'm pretty much going through everything you mentioned. I keep trying to tell myself, "oh, its arthritis", "oh its just RLS", etc. etc., but each one by itself, thinking they're wrong, I just have a bunch of separate ailments hitting me all at once.

    The rheum. dr. has already said she's against narcotic pain killers. She's all for exercise and therapy, and after the sleep test wants to start physical therapy that include water exercises. I'm not the most graceful person in the world,(lol) but Tai Chi has gotten my attention. And you're right, I have to find time for myself. I have spent a lifetime putting myself on the backburner. I've raised kids, been divorced, survived cancer and a near fatal blood clot but I still put everyone first. I'm not sure how to change that but perhaps I'm making a start in my decision to move back home.

    You're so right about it being a vicious cycle. A couple days ago I felt halfway decent and I was SO happy about it but I overdid it even though it wasn't much, it was more than I'd done in a while, and paid for it dearly yesterday and so far today. Such a major downer. I have to find my limitations.

    I think I have finally found a good dr. Funny because instead of me trying to convince her there's something wrong, she's trying to convince me; just not with information I want to hear. Interesting how the tables turn.

    But again, I thank you for your advice. I'm really looking forward to "meeting" more people here, learning what I need to know and even make some friends along the way. :)
  6. shar6710

    shar6710 New Member

    It really sounds like you are on the right track.

    IMHO sleep disturbances have a HUGE effect on our symptoms so be sure to get that study done.

    As for the exercise thing: I don't have FMS but I know some here find the water exercises help them. But be very careful if you have CFS really listen to your body and don't do too much.

    Haleycole has some very good info posted on here about push/crash cycles and living within your energy envelope. If I can find them I'll bump them for you.

    Good luck,
    Shar
  7. carebelle

    carebelle New Member

    I grew up in Cincinnati but live in Va now.Just wanted to say Hi and welcome to our World .

    This is a great board for getting information about this DD or even helping others with what has help you to deal with it.

    welcome again Glad you found us.
  8. spiritsky

    spiritsky Member

    to the board Chris...Sounds all so familiar. There's a lot of great information here and people who really want to help. Keep looking for the answers, sounds like you have a good attitude and have gotten over the denial. That's the first BIG step to recovery. Good luck in your search.
  9. Chris3251

    Chris3251 New Member

    ...for the warm welcome, everyone!

    Shar - I'm anxious to start physical therapy but afraid at the same time? My dr. said exercise is SO important and she assured me it would be baby steps the whole way but it has to be done. I think my biggest challenge is knowing what my limitations are and knowing when I'm pushing the envelope because I've always been the type to keep going when I can't go anymore. I'm finding out the hard way that even minor tasks for me come with big consequences. Pain of course and I can't tell you how many times I've dozed off today, even sitting straight up in a chair at home, at the drs office, etc. I finally had to give in and lay down for a couple hours. Any info on push / crash cycles would be greatly appreciated!

    Angela - Thank you for the compliment. Sasha is one of my 4 legged kids.

    Ovrwhelm - I wish I could take off and ease back into it, but I'm already in a tough boat. I've been off a week now due to yet another bacterial infection & a stone in the salivary gland. I'm out of vacation time and FMLA. I have an appt with an ENT Wed. to see if surgery is necessary, but I have to get back to work asap since I'm a single parent. Just getting prepared for a move has been pure stress but I have family coming out from IL when the time comes to help pack and drive. I had a hysterectomy 3 yrs ago so fortunately I don't have to worry about female problems.

    Care - thank you for the welcome. I hope to learn alot of information.

    Spiritsky - thank you as well. I'm so thrilled to find a place where so many people are willing to help and offer advice! This really helps my morale!

    Thanks again everyone!
  10. Chris3251

    Chris3251 New Member

    I'm not sure about the LTD benefits. When I was out last fall with Sepsis, during the course of tests they kept finding one other thing wrong right after the other, and my dr. refused to let me go back to work because I had tried twice and both times I landed in the hospital.

    I ended up being out from 8/05-4/30/05. I exhausted my ST benefits after 26 weeks and applied for LTD. My dr's office faxed in the paperwork on time but there was a mixup with my last name as I took my maiden name back when I got divorced. My employer was aware of the name change but hadn't actually changed it in their system. They received the paperwork under my maiden name but still had me in their system under my married name. They *should* have done a cross search by SSN but they didn't so they tossed the paperwork and denied the claim. I'm certain that all of this was intentional because they were mad that they got socked by workers comp when I broke my foot.

    My direct boss approved a discretionary leave but at no pay, so I strong armed my drs to let me return to work. Since I have now been out again for over a week I have to call the Benefits dept. today to see if I re-qualify for ST benefits which kicks in on the 8th day. Even if I do qualify for ST for another full 26 weeks, I will have moved back to IL by the time that 26 weeks is up, so once I'm moved I don't know where I'll need to start.

    According to my sister, if I don't have a job or a well paying job I should definitely meet the requirements for Medicaid since my daughter is almost 16. As for anything beyond that, I honestly have no idea. I'm new to the whole world of disability, SSDI, etc. and have no clue of what I need to do or what I'm about to face. I'm assuming when I move I should get all of my medical records from my drs and hope they release them to me.

    I'm curious to know what supplements you are referring to in order to boost the immune system so I can discuss them with my drs. I now catch everything coming and going, and with the recurring bacterial infections, I'm assuming my immune system is shot. My family dr. has me on Percocet for pain, but the rheumo dr said she is against anything narcotic in nature and eventually wants to get me off of it, so I'm thinking she's more into a natural approach. I've been on Percocet for over a year so I don't know how hard its going to be to get off of them.

    Thanks for explaining push / crash cycles. I guess the term is self explanatory. I definitely need to be more observant and learn my limitations because looking back I can see where I've had some pretty rough crashes, even in the past week.

    Thanks for all of your advice. Any info I can get helps tremendously.
  11. marsupialmama

    marsupialmama New Member

    to the board, I still feel like a bit of a newbie too. But there are lovely supportive people here with lots of info and experience to share.

    I love that kitty in your profile pic! so cute! BTW I check the cute overload site every day for an antidote from the daily news and other stresses.

    I haven't been officially diagnosed with FM but the naturopath thinks I have it, plus candida. I'm supposed to go on a sugar-free, yeast-free diet (waaah!). In the meantime I am trying physio for some of the long-term pains (mostly feet and back, right now).

    I hope your move goes well, try it is as stress-free as poss by dumping all the junk and clutter first, then labelling all remaining boxes on all 4 sides and the top. Seriously. :) Then get someone else to do all the heavy lifting. Worked for me last year when we moved!
  12. Chris3251

    Chris3251 New Member

    Thank you Marsupial. Sasha is my 4 mo. old 4 legged demon child...I mean Himalayan...LOL. I also have a Shetland Sheepdog (mini collie). Right now we're learning that climbing the Xmas tree is NOT cool...LOL.

    I had to chuckle at your moving advice in regards to labeling containers. I just went thru that over the weekend with my daughter and she laughed at me for wanting to label everything on all 4 sides. My sister is pretty aware of my physical limitations and it helps to have a niece who's an RN, so they plus my nieces fiancee are driving to Ohio to help, plus if I have a moving company, they'll be doing the bulk of the physical lifting and moving. And hopefully we'll have enough drivers so I won't actually have to do 10 hours of driving myself.

    I won't know exactly what my drs plan is until I see her in a couple of weeks. She's still getting lab reports back, etc. So far I really like her and I'm gathering information, writing it down to discuss when I go back.

    I'm ready to drop..nap time.
  13. Sharon52

    Sharon52 New Member

    Hi Chris,
    My name is Sharon and I am 52 years old. I have had fibromyalgia since 1999. This past year I began to lose weight and over the past 2 months (at the least) I have been tired beyond belief, waking up at night chilling and achy right to the bone. I would take Tylenol & wake up drenched in sweat. I began checking my temperature & I was running low grade fevers. Well I made an appointment with my doctor in mid-November. They ran all types of bloodwork this time. Mono came back negative but the Epstein Barr Virus Acute Infection Antibodies came back high in all 4 parts. One part, the EBV Ab VCA IgG first came back with a reading of 3175 and I was retested. That number increased to 3681, the Nuclear Antigen was 942 in November and now is 930, the early antigen Ab, IgG was 184 now 195 & the EBV Ab VCA IgM was 323 and is now 626. I am in the convalescent phase. My doctor told me my symptoms could last 2 weeks, 2 months, 2 years or never go away. How encouraging...sigh. He told me rest was absolutely necessary. I told him I could not take off work (I am the sole supporter of myself). At this time I am allowed to work but I must come straight home & rest the rest of the time. You are NOT A HYPOCHONDRIAC!! Your symptoms are real and there is a cause for them. I also have high blood pressure, GE reflux, CFS & fibromyalgia. I am being treated for depression (started in 1999). Tired doesn't even describe how I feel. I am beyond tired. If I do a few things around the house, it sets me back. The doctor told me on a day where I felt better, do not start doing things, continue to rest because you will pay for it. He told me to continue to rest, its a must. I have a daughter and son. My daughter has 4 children, ages 11 through 18 months. I am even too tired to spend time with them. I worry about my job, too. In 2003, I had a complete mental breakdown & was off on short term disability for it. That caused me to lose a higher position in my job. That brain fog you have, I have, too. I will get up to go get something & as soon as I stand up, I forget what I was to get. I put things where they don't go & then forget where I put them. I don't go anywhere either unless I absolutely have to. I feel like not only do I take as much medicine as 80-year old, I feel LIKE an 80-year old. Not knowing what direction this virus will go, is disburbing to me. I worry and am stressed out, too. I have carpal tunnel in both wrists. My hands go numb, etc. My joints ache, my muscles & I feel like it goes right to the bone. Well, I have unloaded, too but I think we need to do that. Well, I just wanted you to know you are not alone. Hopefully there will be a light at the end of the tunnel for both of us.
    Have a great day,
    Sharon :)
    [This Message was Edited on 12/16/2006]