New Here, Undiagnosed

[keepingfaith]

Hi I'm new and not sure what's going on with me. I just recently suspected I may actually have fibro after talking with a good friend of mine about my numerous symptoms and day to day feelings. She said you know my mom has fibromyalgia and she started telling me about it. I did notice several similarities between what she was telling me and my own personal experiences. However my question for those of you suffering with this is how did it first present itself (severity, location, type of pain or sensation, etc) and how has it progressed over time? I know these questions are vague but for me I have gotten continually worse over the last year and a half and I'm looking for something I can relate too. I have been to several doctors all of which find nothing wrong with me as far as blood tests go. I also have seen a neurologist and they suggested possible peripheral neuropathy which I am leaning toward. The problem is the tests don't reflect that. They just suspect it. Any advice or help understanding would be appreciated. Thank you...Robin

[mrsD]

Hello, Robin, and welcome to NeuroTalk:

When you had your tests, did you have B12 done? Did you get the numerical results? If not, you need this test first, before going further. If you had it and your doctor said "normal" you need to know that lab ranges in US report very low numbers as normal and that has changed about a decade ago, but not made it down to your doctor's level. You should be at 400pg/ml at the least. If you are lower than that or around 400 you are not in a good place and you could have nerve pain and deterioration.

Here is a link to read:
http://www.aafp.org/afp/2003/0301/p979.html
While this is for doctors, it is understandable to everyone.

Low B12 is very common today, and you must find out if you are one of those afflicted, the sooner the better.

This is our PN forum with alot of information on neuropathy, and what can cause it, how you can remove the triggers if possible, and supplements to extend healing and prevent further damage:
http://neurotalk.psychcentral.com/forum20.html

Another base to cover is Vit D levels. When you get your B12 done, have this run too. (unless you have results on this already?)

[keepingfaith]

Hi MrsD and thanks for your quick reply. I have had my vitamin B12 checked when this problem first started so that was over a year ago. The number was 511. Your right though my doctor's range lists low at 193 and high at 900. I requested to have my vitamin D checked in November of this year and my doctor said we don't need to check that we all have low vitamin D because of where we live (Chicago). So she didn't check it. I'm actually shocked that she responded that way. And then she proceeded to write me off as being stressed which has been the common thing for them to do. I am stressed, who here isn't stressed with all these symptoms? I have toyed with the idea of starting a vitamin supplement just to see if it helps, but the one time I took it it made me nauseous and since my levels were normal I just figured I'd try to eat better. I have an appointment with my neuro on January 15th. I am hoping he can see my progression, not that I want a terrible diagnosis, but I just want to find hope again. I will check out the neuropathy forum. Thanks!

[biobabe]

Hi keeping faith!

I am wondering if it might be myofascial pain syndrome (MPS), which is quite similar to fibro., but less wide-spread.

May I ask which symptoms you experience?

[Dmom3005]

Fibromyalgia, is something that after they rule everything else out they usually tell someone that they have. Its something that you have pain in
many if not all joints and muscles of the body.

Donna

[keepingfaith]

Hi thanks for your replies! It's been awhile since I started this thread and I am still undiagnosed aside from my neuropathy. My neuro considered FM and told me I should see a rheumatologist (sp?) IF he couldn't come to a conclusion...unfortunately I ended up having some abnormal white matter on my brain so now I he is pushing me to do a lumbar puncture. He thinks it could possibly be MS. I suffer from muscle pain, tightness really bad in my back, but I also have blurry vision, twitching, loss of balance, brain fog, slurred speech at times. I am actually in between insurances at the moment so I think when I get my new card I am going to start with the rheum. I have heard so many good things about these doctors as far as them thinking outside the box and getting to the bottom of people's issues. I will keep you guys posted.

[Dmom3005]

The one thing you need to know about fibromyalgia. They usually rule
everything else out before diagnosing this.


Donna

[Judy2]

Hi Robin and a late welcome to NT. I'm sorry you're experiencing these symptoms and the frustration of not getting a diagnosis. Some of your symptoms do sound like MS, but they could also be many other diseases that mimic MS. As you can see by my signature, I have both -- MS came first, then while on one of the Injectable drugs I developed fibro.

Sometimes it's difficult differentiating between the two -- they both have a lot of pain (at least for me). And MS is another one that they diagnose after ruling out a bunch of other things. Good luck with whatever your outcome may be!

.................

[inchronicpain]

Originally Posted by keepingfaith

Hi I'm new and not sure what's going on with me. I just recently suspected I may actually have fibro after talking with a good friend of mine about my numerous symptoms and day to day feelings. She said you know my mom has fibromyalgia and she started telling me about it. I did notice several similarities between what she was telling me and my own personal experiences. However my question for those of you suffering with this is how did it first present itself (severity, location, type of pain or sensation, etc) and how has it progressed over time? I know these questions are vague but for me I have gotten continually worse over the last year and a half and I'm looking for something I can relate too. I have been to several doctors all of which find nothing wrong with me as far as blood tests go. I also have seen a neurologist and they suggested possible peripheral neuropathy which I am leaning toward. The problem is the tests don't reflect that. They just suspect it. Any advice or help understanding would be appreciated. Thank you...Robin

hey robin yes rheumatologist are great doctors i know mine got to the bottom of what was wrong with me i was told when i was married by a doctor i was seeing i had fibro



but when i went to rheumatologist here in this state he got to the bottom of it and told me i do have fibro and its serve and sent me to doctor in the same office thats now taken care of my pain with meds and exerice and doing simple muscle stretches .

she also wants me in some kind of walking program during summer she treats all her fibro patients with meds and other things during the winter i know that winter is the worse for me .

with fibro flares and the pain summer does make me hurt to but not as bad as winter. she also said people with fibro need atleast 8 hours of sleep every night.

she also wanted me to get icy hot and rub it on my muscles and also take hot shower or bath to losen the muscles.