Serious CRS Syndrome

Discussion in 'Fibromyalgia Main Forum' started by selasela, Mar 23, 2006.

  1. selasela

    selasela New Member

    CRS Syndrome is "Can't Remember S*** Syndrome"--I hope you are laughing! My concern, however, is serious. I am on day 6 of 75 mg. Lyrica 2 times daily. It really seems to work--not necessarily for the fibro pain; it just kinda makes you not care about it--I suppose I'm in the euphoria phase. I have, however, been forgetting EVERYTHING. Today, for example, I finally found my sunglasses in my cutlery drawer--go figure! I went to pick up my "real" script today, as I have been on the famous "7 day free trial" and I found out that my insurance requires a prior authorization because they prefer neurontin. Is there any difference between the two? My pharm says there is. For one thing, Lyrica is a controlled substance. I guess I'm not sure why. Can anyone explain? I am also kinda nauseated. Is the honeymoon coming to an end? What can I expect? Do I need to ask my GP to increase the dose with time?

    For the record, I've had fibro for apprx. 3 yrs. I've also had several positive ANA--very high 1:1280-speckled pattern/ a moderately high rheumatoid factor, a moderately high westergren sed rate, etc. etc. Yet I have not been diagnosed with lupus or RA--fibro is my diagnosis. I've been to 4 rheums. One says I clearly have an "inflammatory arthritis", but he literally told me not to come back to him when the prednisone he put me on did absolutely nothing. I went to another rheum--an odd duck of a fellow who has been in practice for 30 yrs. He was so certain it was fibro and only fibro. He tried mirapex and requip; neither of which made much difference, so I quit both. (He did tell me to anticipate pregabalin. He knew it had some success. And I really liked him!) Stopped seeing him because he was actually out of my network, and I can't afford to go to docs that don't take my insurance. ANother rheum--one that I have waited 4 hrs. in his waiting room to see--also says fibro and gave me cymbalta--a drug that did nothing and was EVIL when I came off of it. It caused COLOSSAL withdrawal, and I will never take it again! And the 4 hr wait was just completely unacceptable. I would get so angry and agitatated waiting for my appointment that it had a negative effect on my health. I don't caRe how thorough a doctor is, if you have to routinely wait hours to see him/her, the doctor is overbooking. I too have a life, and I refuse to wait that long--I simply refuse! Next rheum--who was actually a NP, and she said fibro--maybe--and said maybe amitriptiline--i think--at night. I didn't agree to take it. Having come off cymbalta, I wasn't too quick to take anything else.

    My GP gave me lyrica last week. I was in the middle of a 3 wk flair when I saw her. I was in such pain. So far, I guess Lyrica is OK. I am 41--abruptly went through menopause at 37--and it's been downhill healthwise since. Personally, I've had alot of stress: hubby quit job and went to law school--while he did finish successfully and find another job, two major things happened: 1--we had a child--our first and only--in his 2nd year and I was 100% financially responsible for everything and solely responsible for the care of our daughter--he lived in another state, and I was here alone with absolutely no help from anyone--no family at all here and 2--we incurred $100,000 of law school debt. It's been a hard few years. I haven't gone crazy with stress and tension--menopause, mothering, massive debt, etc. , and I still smile everyday, but this may also be driving me to illness. Maybe I need a long overdue meltdown.

    Workwise I'm a tenured professor--a job i've held for 20 yrs. I won't bore you with my work garbage, but work, which is usually very consistent, has recently become unbearable in the stress factor--people getting fired, etc. I feel like a wreck most days, but I keep on going--like the d*** energizer bunny. I'm tired; I'm angry; I'm broke; I'm in pain. I'm even losing my religion. I need this community. Your support, I can't get anywhere else. At work, for example, most people don't even know i'm sick--and god knows, I am. An interesting part of my past is that I've had apprx 50 pints of blood transfused into me because of a problem I was born with. I always wonder if that caused my current problems, or if it's just my life's stress. Thoughts on this from what caused your fibro are so appreciated by me. In the college where I work, several women have developed it. One was a close friend. She told me she attended a workshop in CA and developed a sinus infection while there. On the plane trip home--to the east coast--she was miserable and never really recovered. She is now on disability. An old family doc I had said he thought cats cause some of the autoimmune diseases--and god knows, I've had my share of bites and scratches. Have you wondered what caused your illness? Is it an environmental factor? an emotional one? I just don't know. ALso, I had an aunt--paternal--who died from lupus and scleroderma--this makes me wonder. Hmmmm. What do you think made you sick? I'm convinced something did. My illness theory is this: there is always a genetic make-up that makes one vulnerable, but there is also always an environmental aggravator. Thoughts?
  2. selasela

    selasela New Member

    I got on the boards all excited to see your thoughts to my original posts--and I have none. Please post.
  3. tonakay

    tonakay New Member

    My first signs of FM where neck and shoulder pain and it started after my total hyster in '01. I too am taking a sample bottle of 50mg Lyrica. I didn't know that it was a controlled substance. I will not continue with it though as it is non-preferred med on my insurance list. I have already tried neurontin and it's generic gabapentin. I think I may ask for topamax to try next.

    I also take lortab for pain and flexeril once in a while when muscles are really bad. I had to quit work in '03 after a nasty bout with Epstein Barr virus. The only thing I do now is my treadmill for three to four miles a day. That's the only exercise I get and I refuse to give it up. Some days it kills me to get on there but I make it through.

    Don't have any fantastic answers for you but this will bump you back over to page one....

    Good luck!
  4. dragon06

    dragon06 New Member

    Lyrica is definitly different from Neurontin. My MIL has taken both and I have discussed both with my doctor. She says she prefers Lyrica for FM patients and has had much better results with it and that there were better results with it in the clinical trials as well.[This Message was Edited on 03/24/2006]
  5. tonakay

    tonakay New Member

  6. Cromwell

    Cromwell New Member

    I have not gotten back sooner. I have been having a bad time of late.

    Well, I just started to answer then went back to read your original post, as I was about to say that menopause gives one CRS. Then I read you had very early onset of MP. I also wanted to see if you were a female, as you left your bio blank but the early menopause clued me in(LOL).

    I know little about medications as I am med sensitive and also a fraidy cat when it comes to meds. read too much small print syndrome maybe(LOL) (again)

    However, when you say you are a tenured Professor I can relate to that. I live around a lot of people in academia, the whole family being professors, and the like(as a mere psychologist I am way down the pecking order) so I do know about the awful stress of working in the academic field with all the back stabbing and firing and he said she said going on.

    Our own Ivy League here has just got yet another new "Leader", so it is trickle down or up!!!!

    There is also a certain monotony unless you are doing research studies where you have some autonomy.

    I read with interest your theory, and hope a few others get to it now. I do agree with you. I do beleive that as with many illnesses there is a certain predisposition or genetic
    link, that is then triggered by environmental factors, maybe a chemical or a virus or even bacteria.

    I do know that many people here had triggers that set off their rapid declines. I know I did. My old FP thought that all FM/CFS was really post viral in nature. That viruses get into the body and just create havoc thereafter.

    For my own FM I get flares that usually occur in November and last through April which I think are linked to maybe having the flu shot early November which I will not do next year. As I had asthma I was scared of getting the flu, but since my dogs died I do not get very much asthma just when the house is dusty(like now).

    I think the fact that you had so much blood transfused could be part of the issue.

    I read that a man in Florida who had a liver transplant developed peannut allergy and it was known that the donor had had that allergy. So why not with blood? Mad Cow disease gets transferred via blood, AIDS and a host of other illnesses.

    The problem is with FM is that it is not given the credance it should get. My MIL just was here and as my rheumy just told me I did not appear to have lupus after all, she said, I have been reading up and I think you have FM" I said, "Yes I know I have had it about 20 years with it becoming severe about eight years ago." She then said "Oh well, nothing to worry about then as it won't kill you and is really just very mild".

    I was aghast as she has seen me crippled up in agony many times. She is lovely, but this is what she read. It is mild.

    BTW If you retitle your post to read something that will catch their eye, referring to Need thoughts on Possible Causes that type of thing. So many of us have brain fog here, that it may not immediately register what CRS is, and people may skip it thinking it is an illness they cannot answer about.

    I can also tell you that it will help to do shorter paras, just go back in and edit to split the paras, even if it is not grammatically correct, it helps some here to read.

    As a newbie I hope this helps, as your theory is interesting and others may like to read it.

    I am so sorry you are under this cloud of stress. Just keep posting and maybe just try my suggestions. I had to learn and STILL write too long letters back.......

    Love and feel better,

    Anne C
  7. Cromwell

    Cromwell New Member


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