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getting diagnosed
4 Replies
Doug Tomlinson - June 2

I imagine everyone here has gone through the frustration of trying to get a diagnoses of something that has plagued them for years and always misdiagosed or just not diagnosed at all. This is the process that i am experiencing right now. Perhaps this has been my own doing. I am a 33 year old male and have not expressed every little thing that bothers me, for fear of being labeled a wimp or a "hyprocondraic". i feel that i had to "tough it out", so that i could stay at my job so that i could provide for my family. From what i've read, that's why men have a harder time getting diagnosed. I was initially diagnosed with lyme disease because the symptons all started with a rash, and was told that anti-biotics would clear it up within a few months. But over 1 year later it only seems to be getting worse. Then recently after a major bout of depression (which i often thought of the unspeakable) i finally had the courage to admit to myself and others that i just can't do it anymore. So i wrote a 3 page letter to my doctor detailing every ache and pain and sympton that i've had for the last year or so. She finally suspects that it may be Fibromyalgia, and after much research i agree. All my sypmtons alarmingly point to fibromyalgia, but i still have many questions. I see my doctor again soon. If other people could share how they got diagnosed it might help me understand the process and what i'm facing here.

 

Fantod - June 2

Hi Doug - First of all, I recommend that you find a board certified rheumotolgist. They would be the best way to determine if you have FMS. I figured out that I have FMS because I have a close friend that has been dealing with it for years. I had enough familarity with her symptoms to make the connection. The rheumotologist just confirmed what I already knew. I posted some links yesterday about pain and a medication called Lyrica. The article on pain was pretty informative and I recommend you take a look at it. It is rare for men to have FMS but not unheard of. I have used accupuncture to control pain, Ketaprofen is another alternative. The latter is a cream made up by a compund pharmacy that eases pain without getting into your blood stream. You'll need help with sleeping. The standard approach is to try Amitriptyline which is one of the few classes of drugs that work for FMS. The basic issue is that FMS is a disorder of the central nervous system. No one understands the mechanism that starts the process therefore there is no cure. It can be managed but not always effectively. We all go through "flares" periodically. I don't think you should beat yourself up for not telling anyone how horrible you were feeling. Women do the same thing to avoid being labeled as hysterical chronic complainers. I would encourage you to find a rheumotologist and consider some alternative medicine like accupuncture. I wish you the very best. Anytime you need to vent, someone is usually around on this board to help.

 

JJ1 - June 3

Fibromyalgia is generally diagnosed by eliminating other ailments that can have similar symptoms such as Lupus, rheumatoid arthrities, Lyme disease, etc. You are also supposed to have 11 of 18 specific tender points on your body, but I don't have that. My doctor says that the tenderpoints are used to screen candidates for clinical trials but are not present in all fibromyalgia patients. I have been helped tremendously by amytriptyline (Elavil). In larger doses it is used as an antidepressant, but at lower doses it is an aid to help get to deep sleep. A common complaint of fibromyalgia sufferers is that they can sleep for a normal amount of time but never feel rested when they wake up. The theory is that you may be sleeping lightly, but never really enter the deeper restorative sleep that your body needs to feel rested. Elavil aids in getting a deep sleep. I have been on elavil for several years now, really have no noticeable side effects and my pain is more intermittent and rarely severe. I do suffer from fibrofog and have memory and concerntration/focus issues. Good luck with getting a diagnosis.

 

Doug Tomlinson - June 4

Seems like i'm on the right path to getting a diagnoses. I am seeing a therapist to help with the depression along with Paxil. and see an internal medicine specialist soon. It's just the amount of time that it's taking that is the worst. I'm currently on amitriptyline and it does seem to help me sleep better, but i still wake up feeling unrefreshed and sometimes worse than before i went to bed. usually very stiff and sore with a major headache. The worst part is that my major sympton is RLS and it feels like i ran a marathon in my sleep. Can't seem to find anything yet that relieves the cramps in my calves (which have been like that for a year now). And the unrelenting headaches, I can barely go outside because the sun always seems so friggin' bright, only makes the headaches worse. Anyone find anything that helps the headaches, cause normal pain relievers just don't cut it? The intermittent memory loss is starting to annoy me. I forgot to get my son off the school bus several times and he ended up going back to school , where they had to call me to come and pick him up. Thankfully his teacher is aware of the circumstances otherwise it could have been very serious. it makes me seem unattentive to people. I often forget what someone said just seconds before and ask the same questions over and over. I often forget very familiar information, like peoples names and places that i've worked at for long periods of time. I guess thats part of the fibro fog that everyone talks about? Thanks for everyones advice and support i'll keep you posted on any changes or results.

God bless,

Doug

 

neuro1 - June 5

Doug...I feel your pain. I was misdiagnosed for years (my current docs believe that I have had FMS since I was 16). Once I was in university- I began questioning many of my medical problems. I cataloged my symptoms in detail for 2 years and presented them to my family phys. He sent me to a rheumie and I was finally diagnosed. Even when you get to a specialist you still have a long road...JJ1 is absolutely right...FMS is a syndrome diagnosed by process of elimination. I also agree with Fantod...a rheumie is one of the best starting points. Keep your chin up, you're not alone. I once never thought I would be able to get my PhD b/c of my "fibro fog." But anything is possible...trust me. Now my students find it amusing when I have "fibro fog" moment.

 

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