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Old 05-12-2004, 04:23 AM   #1
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Join Date: May 2004
Location: NY
Posts: 241
Dee74 HB User
Still a long road ahead it seems :(

I went back to my doc yesterday.. she's a wonderful woman. I just switched over to her a couple of months ago from a total quack who diagnosed me with Fibro the first day he ever met me without any of my medical records (I had just moved). She's very concerned, I mean, she's not one of these doctors who just give up or tell you it's all in your head when she can't figure it out.. she'll send me to another doc. She's still not satisfied with the Fibromyalgia diagnosis.

Well, yesterday, I was in SO much pain I could barely move (I don't have those days too often thank god). My joints were throbbing so badly, and my leg muscles were constantly cramping up that I was in tears practically all day. She said that my latest bloodwork was all ok, other than high albumin levels and low platelets.. ANA was negative (she suspected Lupus), RA factor (? not sure what that test is) was negative, and ESR was normal. I did have a low grade fever, 99.4 degrees.

I broke down bawling when she told me everything seemed normal.. the platelet counts, I already knew about. She said the Albumin level could have been high because I was fasting before the test (dehydration). I was really praying that SOMETHING would show up pointing to what the heck is wrong with me.

She's sending me to a Rheumatoligist now.. I have to call today. She said that if he can't figure it out, she's sending me to Cleveland Ohio (I'm in NY) because there's some really good doctors there - she said maybe I DO have something that just isn't showing up on tests yet.. such as Lupus. Apparently it can take years for the ANA to be positive? I don't know. I'm also going to be tested for Lyme disease since I was bitten by a tick about 3 1/2 years ago that left a huge rash on my leg.. my old doc back then didn't test me for it, and she's doubtful that it would show on tests NOW, but she still wants to make sure.

She's never offered me strong pain meds before until I broke down yesterday.. I left there with a prescription for 60 hydrocodone 500mg.. I'll never take that much. I have a low tolerance to things like that. It knocks me out so it's not something that I can really function with so I'll definately save them for days like these past 2 I've had.

I'm just so frustrated. If nothing's showing up yet, how on earth is a Rheumatologist going to figure it out either??

I just want to give up sometimes. It's so hard to be "sick" and have NO clue what the heck is wrong with you. I haven't been able to work in over 3 years because I never know from one day to the next how much pain I'm going to be in. I want my life back

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Old 05-12-2004, 05:40 AM   #2
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Join Date: Apr 2004
Location: Fond du Lac, WI
Posts: 250
typingterror HB User
Re: Still a long road ahead it seems :(

Dee, my sentiments exactly. I fight nausea now almost 24 hours a day due to pain. I have been forced to sleep in a recliner for the last several months after sleeping on couch for last several years as sleeping in bed causes me such severe pain when I turn in my sleep and difficulty getting out of it which triggers severe lower back pain so I then have difficulty walking. No two days are the same and it seems there are no good days any more as I have been down this time since December. It is difficult to find pleasure in anything anymore. I am so tired of the "pity party" we have to attend so often. Thank God for computer as we are able to connect with others in our situation and find in comfort in a symptom we do not have. I have always had very little patience for being sick so this has me overwhelmed all the time. It is depressing to see yourself deteriorate and helpless to do anything about it. I have modified my life so much that I cannot imagine anything else I could do to make it any easier unless I just laid in bathtub for rest of my life. I hate having to give progress reports to massage therapist every couple days and trying to justify every time I slide further back as it makes me angry and more disgusted so I do not even like myself and do not like communicating as I just want to scream at her. I refer to myself as the walking dead as that is what I now look like from being in so much pain all the time and surviving on little sleep. I have constant heat attacks where I will break out in profuse sweating so I feel just like running around naked which would not be a pretty picture. Wouldn't it be nice if they could just put us somewhere and keep testing and trials on meds ongoing until we had some sort of handle on situation whereby we could lead a semi-normal life? I no longer even have any hope of ever getting better and would be satisfied with just staying stable instead of such huge fluctuations. I just want to see a doctor (I don't even care what he/she specializes in) who actually enjoys being a doctor and treating people rather than being kicked around. Well, now that I have vented I hope it makes you feel better. I am hoping rheumatologist has more knowledge on different things to try to give you some relief. I hate meds also but on really bad days would gladly spend $1000 for a pill to just knock me out for a week which is unrealistic as I am working part-time, but a wild hare brained fantasy. (TT)

Old 05-12-2004, 06:01 AM   #3
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Join Date: May 2004
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Dee74 HB User
Re: Still a long road ahead it seems :(

TT, I totally hear you.. before I got sick with whatever this is, I was SO different. I laughed, I had fun, I danced, I could take my kids to the park and play WITH them instead of sit on the bench and wish I could join in. I'm 29 but my body feels like it's 80 yrs old now.

I just thank GOD that I have a nice caring doctor now. When I broke down in her office yesterday, she hugged me and said "oh sweety, please don't cry, we'll get it figured out". Which just made me cry harder. My husband is also very supportive. I don't know what I would do without him. His family is also pretty understanding when it comes to cancelling plans and whatnot when I have my bad days.

My old doc was horrible.. his remedy for this was "just exercise (cardio especially) every day for at least an hour". YEH OK.. I can barely get out of bed and you want me to do something like Tae Bo? I do walk whenever I can, just to work my muscles a bit. He also told me that depression caused this.. well I wasn't depressed before I got sick.. of course I'm depressed now! Who wouldn't be? If they dealt with pain EVERY SINGLE MINUTE of their life, wouldn't they be depressed too? Of course they would!

I did have one of those EMG & NCV tests a while back that showed I had some muscle deterioration.. so I'm trying to build them up a bit. I also lost 36 lbs.. basically with the thought that the less weight I have to lug around, the less pain. Well, it did help the strain on my muscles, it's easier to get up now, but it did nothing for the joint pain at all.

I hope and pray that the Rheumy finds something.. or at least has a clue. I hate being in limbo and not knowing WHAT it is. How can you accurately treat something when you don't know?

I will keep you in my prayers.. I'm so glad I found these boards, it's good to know I'm not alone.. as bad as that sounds. At least I know I'm not crazy

Old 05-12-2004, 12:16 PM   #4
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Join Date: Apr 2004
Location: Fond du Lac, WI
Posts: 250
typingterror HB User
Re: Still a long road ahead it seems :(

I just signed up for program at hospital next Wednesday night given by rheumatologist called "New Treatment for Arthritis - Are You Doing All You Can? She will probably wonder why a zombie is at her program. Anyway, my wrists and ankles have really been going ape last couple of months which I am sure is arthritis. I will get a chance to check her out before my appointment on 27th. It probably has to do with intravenous medication they are giving for arthritis which they also use for Crohn's disease and there is also an injection you can give yourself. This will be first activity I have even attempted at night in years so it will be interesting to see how I hold up after working and going to massage therapy first. Good luck on building up your arms as I found this was not possible for me. Losing weight is a great morale booster. I was totally sedentary for one year outside of typing at home after I failed my first round of PT a few years ago. I was really depressed, but then chewed myself out and knew I had to get control of the situation so I started in-home exercise program whereby losing 4" all over and it was really, really hard. However, in spite of walking 2 miles per day it is really a struggle now as I have very little endurance so cannot do it all at one time and then as I heat up the clothes go flying before I pass out from a heat stroke. I know at times that walking will promote more cramping, however it is a necessity that I continue or I will lose more range of motion. You have to keep patting yourself on the back for every little insignificant thing you do. My mother died with Alzheimer's and was in better shape than I am and of course she had the advantage of not even knowing what was happening...OMG, it sounds like I am jealous of that factor right now. It shows you how warped our minds become when you are looking for relief. (TT)

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