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View Full Version : New to all this. Losing faith in finding out what is truly wrong



meggie
04-09-2012, 08:09 PM
First, hello to all. I am so thankful to find this site. :)
I am a 23y/o. Since early childhood I have been to the doctor many times b/c my mom said I constantly complained of pain but was determind to stay active. The doctor always dismissed my moms concerns and said I was having "growing pains" and I would eventually grow out of them. Needless to say when I was about 16 y/o my body gave out (horrible pain) on me while playing soccer. That same day in the ER I was diagnosed with Myofascial pain syndrome and fibromyalgia. I started gabapentin (low dose) and now 9yrs later I am taking the max amount I can take of gabapentin that I can. Today, I went back to my doctor b/c I have broken out 3-4 times in the past 4 months on my chin, forehead, and what they call the "butterfly rash area." Again, the doctor diagnosed me today with rosacea. My other complaint to him today was that I knew I was on the max dose of gabapentin that I could take but now I was experiencing debilatating pain in my hands, arms,legs and feet at night. He said he was sorry but could not up my dose but to add tylenol when needed. I told him that I had already tried what he was suggesting but again a dead in road today. My doctor did say when my health insurance came into affect he did want to test me again for Lupus. I am just concerned for my health and getting highly discourage by my doctors. I have always been a busy body and highly active but the recent months and up to today I have found my self to be more of a couch patotoe. I find it hard to even lightly jog, run or even walk for long periods of time. any time lately I am slightly active I find myself to become stricken with horrible pain and all I do is sit where-ever i am at, at the time and just cry from the pain. (This is not me at all) frankly I am just scared that something is happening but the doctors are just dismissing me and my concerns. Thanks for reading and listening! Blessings!

magistramarla
04-09-2012, 08:30 PM
Hi Meggie,
Welcome to WHL! This is a good place to learn more about what you are experiencing and to find support.
Is the doctor that you are seeing a rheumatologist? If not, as soon as your insurance will allow it, you should see one.
Many of us here are taking some other medicines to reduce inflammation or to slow down the progression of our diseases.
Plaquenil is often a first drug that our rheumys try. There are also other meds, like MTX or Prednisone. I'm surprised that your doc hasn't tried any of those.
Keep pushing for something that will get you feeling better.
Meanwhile, make yourself at home here. Read through the threads and stickys, learn as much as you can, and join in on some of the conversations of our little "cyber family".
Hugs,
Marla

P.S. My youngest daughter is named Meghan, and we call her Meggie. She's 25.

meggie
04-09-2012, 08:41 PM
Hi Marla, and thank you for the welcome :) Meggie, is also my nickname and I am also named Megan. :) At the moment, I am not seeing a rheumatologist just my family doc. He did say there were some other meds (did not tell me what they were) that he wanted to try me on when I had the insurance to afford them. He basically said, with out saying today that I would just have to surpass the pain for the next several months until I can afford the meds. On top of everything else that is happening I have also been told that I have complexed migraines. I am just thankful I found people that can relate. Like many others here that have said many friends and family members don't completely understand the amount of pain we experience when we look healthy on the outside ;(

magistramarla
04-09-2012, 08:49 PM
Meggie,
Ask your doc about Plaquenil. It's an old drug - it's been around for a long time - and the generic form is super cheap.
It takes 5 or 6 months before you notice that it is helping, but it definitely helps - just look at some of the old threads about it.
It seems to me that it wouldn't hurt for him to try to get you started on it.
Hugs,
Marla

steve.b
04-09-2012, 09:08 PM
hi meggie.
i am 50.
i had similar problems to you at an early age.
it took me about 35 years to get the proper diagnosis.

i suggest you see a rhuematologist.
they specialise it this type of problem.

tgal
04-09-2012, 09:11 PM
I don't have insurance either and even my plaquenil went up to 50 bucks when I picked it up today! I do suggest that you get to a rhuemy as soon as you can. They know what they are looking for (most of the time) and can often help a bit more quickly

meggie
04-09-2012, 09:13 PM
Thank you steve and tgal... I plan to asap. I am praying that finances will allow it sooner rather than later. I am not sure I can take the pain for the next several months.

steve.b
04-09-2012, 09:21 PM
meggie,
whilst you are waiting......
i use slow release pain killers. panadol osteo.
i think they are called tyradol or something similar in the states.
they are over the counter.