Does anyone share my symptoms?

[Guest]

I am a 28 year old female and have been living with chronic pain for the past 4 years. I haven't been officially diagnosed with anything other than fibromyalgia. My symptoms would come and go in pretty regular patterns and last for about 4-7 days. No medications helped. I was difficult to determine what was a side effect and what was a symptom. Then I got pregnant with my second child and went into remission and felt fantastic! I only had maybe a handful of minor flare ups through out my pregnancy up to a couple of months ago. I had a healthy baby girl in August and quit breast feeding about 3 months ago and then it was back to the way I was before. However, it has gotten progressively worse. My symptoms include:

burning, cramping, swelling, redness, and muscle weakness in hands
neck stiffness, sometimes hard to swallow food and talk loudly
cramping in arches of feet
disoriented, unable to think or process, feel like I'm drunk or being drugged
fatigue
hoarse voice
weakness in hips when I stand with extra weight
water weight gain
twitches in hands and legs, doesn't occur regularly
stiffness
dry skin
It feels like all of my ligaments and tendons are so tight and want to seize up in my neck and my hands around my thumbs then around my palms up to my ring and pinkie fingers
My muscle weakness is weird too, b/c I have great initial strength, but no stamina. My hands will cramp up and start to go numb and tingle

I have good days and bad days. I feel great on my good days and can do mostly everything. The past couple of months I have had flare ups that last for about 10 days and I'm doing good just to function. It it like I'm two completely different people. The only thing that I'm taking right now is tramadol. It is the only thing that helps distract my brain from the pain. It doesn't suppress the pain, but nothing has so far. My neck problems just started and it is scaring me. I have a referral to see a Neurologist. If anyone has any tips or any suggestions that I need to ask the Neurologist it would be greatly appreciated. It seems that I have to come up with any potential diagnosis for all of my doctors. It is very frustrating, and it would be nice just to find one that is proactive. I have been tested for a lot of things already and all my blood work is negative and my previous MRI and the electric reflex thing the neurologist does came back negative as well, but that was almost 4 years ago.

 

[Guest]

sounds autoimmune! Get to a rheumy. A friend of mine has lupus and after her baby, her took her months to recovery. Also, your thyroid could be the issue as this gets funny around pregnancy.

take care~

april

 

[Guest]

Like, April said it could be autoimmune.....

It could also just be your Fibro....What makes me think that is when you say about almost being able to do anything on your good days and then you have your bads and flares.

It does not sound like ALS.

Go to the nuero tell him your symptoms and let him run all the tests again.

hang in there, I know it's not easy.

 

[Guest]

doctors

Thank you so much for your help.
I see a rheumatologist every 6 months and my blood work has came back neg regularly for the past 4 years. I just recently saw an endocrinologist and so far everything has come back neg. It is really weird b/c I do feel so good on my good days, like I'm not even sick. Then when I feel bad I'm completely dependent others, I can't move and it seems that the good periods are getting shorter. It is hard to deal with, but I just live one day at a time and try to stay optimistic. I really wish I could go see House, if he really existed, LOL. I think that the most frustrating thing is all of the "greet and treat" doctors out there. It is like they don't want to put any effort in trying to figure out the mystery, but just pop me full of pills when they can't even figure out what is wrong with me. I see a pain management therapist and an acupuncture specialist and I think that helps a lot.

 

[Guest]

K~

Have you seen a copy of all your records? I had a positive ana and was not even told about! And with your thyroid, you have to make sure that they are testing more than TSH. I read that they think that fibro is really a thyroid issue. You need to see your records and see what they tested for thyroid and what your levels were, and dont forget the parathyroid.