Status
Not open for further replies.

Whyfor

Active member
Joined
Dec 20, 2013
Messages
39
Diagnosis
00/0000
Country
US
State
CA
Hello to all of you! You seem like such a nice community, and while I admit I've never joined a forum particular to my currently unknown condition, I must say, I feel both excited and nervous!

So, here's my story, put as simply as I can manage: I am a 27 year old female with a ten year history of an unknown disease. It all started with a bad case of mono when I was in high school, and ever since then, I felt like I just never got completely better. Suddenly, my athletic, go-getter attitude was taken from me. I steadily began losing strength in my body, and had to quit playing the cello (which was so hard for me). I eventually became so weak and tired that I tested out of school early, just so I could rest.

From then on, I've spent the years going from one doctor to another, showcasing to them my strange laundry list of symptoms, which include fatigue, a loss of stamina, muscle weakness, bone pain, headaches, joint stiffness, random fevers, food intolerances, and some pretty terrible digestive problems. From the doctors I've seen, I've heard just about everything, including "You're depressed," and, "You must be doing this for attention." Occasionally I've found a doctor who was willing to run a few tests, but most of them come back relatively inconclusive. I've had a few positive ANAs and RAs, but many more negative ones. In fact, the only real test result I ever got back that meant anything was a vitamin D level that was so low, the test couldn't even detect it. Since that test about 3 years ago, I've been on a steady dose of the vitamin, and have seen some minimal improvement, but it certainly hasn't solved my problems.

Recently, I've carefully taken up yoga to try and build up some strength, since I've been so frustrated with my ill health over the years. It's slow going, but I am seeing some muscle building. It's just very difficult, but I try to be as gentle as possible. However, my stamina and pain levels have not really changed. :sad:

One doctor I saw did suggest Fibromyalgia to me, but quickly dropped the diagnosis when she tried pressing on the typical pressure points associated with the condition, and found that I was only really sensitive in the spots around my hips. Most of the other locations, funnily enough, felt pretty nice being pressed, since they tend to be areas where I carry my muscle tension. She sort of shrugged her shoulders and sent me on my way after that, but I've always wondered if I really do have Fibro. I'm just so frustrated.

Well, thank you so much for letting me ramble, you guys! I really appreciate the community you have here! Wandering through has already provided me with a wealth of information!
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
I just wanted to let you know that a lot of us have gone through just what your experiencing now, dealing with doctors who can be really rude. I was told that I was pretending to get attention and another time that I must have had a fight with my husband. I was called super woman and make to cry many times after leaving a doctor office. Not fun in the early stages of trying to get diagnosised.

You might try just telling a doctor the worse symptoms. The ones that bother you the most, and then if things go well, tell the others a bit at a time. A rheumatologist is the most helpful for diagnosising fibro. Other doctors might guess at it but fall short when it comes to treatment.

Read through the forum topics and see how others have managed dealing with doctors and medications. Glad you found us. :)
 

tracy45

Member
Joined
Sep 2, 2013
Messages
19
Diagnosis
10/2012
Country
CA
State
AB
Hi Whatfor, your symptoms are almost identical to my own. You should definitely see a rheumatologist like Isweed suggested. The rheumatologist I saw did not even give me the pressure point test as it is no longer believed to apply to all people with fibromyalgia. Keep up with any yoga or exercise you can do as over time it will help even if it does not appear to at the moment. I get long periods of time that most my symptoms are really bad, then suddenly things get better for awhile and the exercise I had been doing really helps me to stay feeling better for longer periods or so it seems. I also developed some food intolerances but had a hard time sorting out what was doing what, so I just developed a basic healthier lifestyle and all food in moderation ( love pasta but I did not cut it out completely, just eat it in moderation). I also stopped using the body cream I was putting on everyday as I suspect I have a lot of intolerances and it is not only from food. Hope this helps and hope you find some relief soon.
 

Whyfor

Active member
Joined
Dec 20, 2013
Messages
39
Diagnosis
00/0000
Country
US
State
CA
Hi Whatfor, your symptoms are almost identical to my own. You should definitely see a rheumatologist like Isweed suggested. The rheumatologist I saw did not even give me the pressure point test as it is no longer believed to apply to all people with fibromyalgia. Keep up with any yoga or exercise you can do as over time it will help even if it does not appear to at the moment. I get long periods of time that most my symptoms are really bad, then suddenly things get better for awhile and the exercise I had been doing really helps me to stay feeling better for longer periods or so it seems. I also developed some food intolerances but had a hard time sorting out what was doing what, so I just developed a basic healthier lifestyle and all food in moderation ( love pasta but I did not cut it out completely, just eat it in moderation). I also stopped using the body cream I was putting on everyday as I suspect I have a lot of intolerances and it is not only from food. Hope this helps and hope you find some relief soon.

Wow, that is incredible! Yes, there are periods of time when I'm...almost normal! I wake up, I'm not immediately exhausted, and I can almost function on an adequate level. But then, almost suddenly, I'll wake up with that old joint pain, my cheeks will become flushed and hot when I'm outside for more than a few minutes, and I'm losing weight without changing a darn thing. My muscles are weak, and I just feel so dang tired. Right now I think I'm in a bit of an upswing, but I'm still nowhere near my peers.

It's comforting to hear that Fibro is no longer specifically diagnosed via the pressure point test. At the time when I saw that particular Rheumatologist, she told me that the pressure points were the only sure-fire method of diagnosis, and if I didn't match that criteria, I probably didn't have it and should seek elsewhere. I had no idea that changed. How is Fibromyalgia diagnosed anymore? Just through symptoms?

Thank you so much for your reply, Tracy. It's been more helpful that you may even realize.
 

tracy45

Member
Joined
Sep 2, 2013
Messages
19
Diagnosis
10/2012
Country
CA
State
AB
There is no specific test right now but they are talking about a blood test we may see in the future - how long away that is, who knows? So yes, a lot of it is just thru symptoms and an informed rheumatologist. I was sent to one when I first had symptoms and he just brushed me off - I think partially because I was feeling good that day and had trouble expressing or remembering all my symptoms. 4 years later I was referred to different rheumatologist who asked many questions and I also had written down the main symptoms so I would not forget to mention them. One of my symptoms is the fibro fog you have probably heard about so now whenever I think of something I want to ask my doctor I write it down and take in the list at my next appointment. Glad you found the info helpful.
 

Whyfor

Active member
Joined
Dec 20, 2013
Messages
39
Diagnosis
00/0000
Country
US
State
CA
There is no specific test right now but they are talking about a blood test we may see in the future - how long away that is, who knows? So yes, a lot of it is just thru symptoms and an informed rheumatologist. I was sent to one when I first had symptoms and he just brushed me off - I think partially because I was feeling good that day and had trouble expressing or remembering all my symptoms. 4 years later I was referred to different rheumatologist who asked many questions and I also had written down the main symptoms so I would not forget to mention them. One of my symptoms is the fibro fog you have probably heard about so now whenever I think of something I want to ask my doctor I write it down and take in the list at my next appointment. Glad you found the info helpful.

You've inspired me to contact my GP and actually pursue this again. I think I've felt so dejected and disillusioned with the whole medical establishment that I've just resigned myself to never knowing for sure. But just knowing that there are others out here who experience the same thing is an incredible feeling.

Part of my problem, I think, is that I created a mental block for myself. I only first heard about Fibromyalgia years ago when it was still being debated as tp whether or not it was even a "real" disease. I felt like it was a throw-away diagnosis that doctors only gave people when they had no idea what was actually happening. However, now that I've been going through these forums and reading new articles about the condition, I think I should re-instate my investigation. I deserve to know what's wrong.

Also, I understand that Fibro fog. Mine usually manifests as a memory "leak". Someone will tell me something, and whoosh! It's gone. I have to ask them to repeat themselves.

I've accepted this for way too long. Thank you so much, Tracy! I'm going to go for it!
 
Status
Not open for further replies.
Top