CM and Fibro

Symptoms and Treatments
1

I hope you all dont mind the larger font, I find it easier to read, lol so I can correct my typos, even tho I am fluent in typonese I am not sure if you all are as well, hahaha.

****WARNING...I RAMBLE....LOL****

OK, so does anyone else have fibromyalgia as well as CM? I was diagnosed with Fibro-whats-it? ( thats what I call it, because everyone asked whats that? lol)3-4 yrs ago now....to be honest, I have such a difficult time, with time lines, memory I cannot say for sure how long it has been.

When I went to see the neurologist, Dr Fast, he asked me a lot of questions, my son was with me, thank god, he could answer a lot of them for me. Does anyone else have difficulty understanding things sometimes or am I just stupid? Its funny, I used to feel smart, I even took mensa tests and scored quite high, but now, it feels like people are talking way above my head sometimes..ok, a lot of the time, LOL. Anyways.. he was asking me about pain in my neck, arms, legs, headaches etc.etc....and I found it difficult to answer him for 2 reasons, 1) I am on pain meds, due to the fibro, deg disc, OA, and spinal stenosis and 2) I have been in pain for so long now, its just part of my life, its all a blur, it all intertwines. There are many times, I dont realize something is sore, like my neck for example, until someone touches it...forget about massages, my muscles are so tight, sore and sensitive, if anyone touches me, I cry.

I end up in more pain than I was in before the massage. Even with the pain meds, I am still in pain, they just make it manageable..so I don't know if I gave him the right answers...I have learned to ignore, put up a wall, between me and the pain, so unless i sit down, close my eyes and just let myself "feel" what my body is saying, I can't say for sure. I don't know if my friends/family realize that when I say I am in pain, I AM IN PAIN, when Im complaining, I am in more pain than normal. I often think if any of them, had to live one day, with all the pain in my body, they'd want to kill themselves...Ughhh, I dont know if any of this even makes any sense, or if I am just talking gibberish. The symptoms for both CM and fibro are so similar, how does one separate the two?

I don't know if my NL is going to suggest surgery, but I suspect he will, because he had said that if it is as bad as he thinks it is, it "can be fixed" as he put it. I have since read, on here, that if the Dr says it can be cured, he is lieing...but I will cross that bridge when I see him on Oct 12.

Im so sick n tired of being sick n tired, my Dad calls me lazy...I start to wonder if I am....I am so tired all the time...I daydream that I have the surgery, and *poof* I get my energy back, I am able to go on walks and exercise again...I am able to do all the things I do not have the energy or ambition for now.....OK, I am done my ramble, I think I have time for a nap before work, LOL. Have a great day all!

2

Hi Lilly,

Love the larger font!!! Easier for me to read!!

You made perfect sense expressing yourself..totally!!!!!

As far a Fibro/Chiari are concerned..from what I have learned is that many people with Chiari were 1st diagnosed with Fibro..and in the end it was the Chiari that was the causing the symptoms.

You said you are seeing the doctor on Oct 12th..is he/she a neurologist or neurosurgeon???? A NS(neurosurgeon) would the one who would give you to low down on the surgery...There is no "cure" for Chiari..only a treatment..decompression surgery ..which is to slow down the progression of symptoms and restore CSF flow.

I had surgery 3 yrs ago and was help by it...Don't get me wrong...I still struggle with symptoms but I am better than before, most days.

I completely understand how you feel..when you say your dad calls you lazy...and then you start to question yourself,.."Hey, maybe I am lazy"....am I right??

Well my friend, YOU ARE NOT LAZY!!!!!!!!!!!!!!!!!!!!!! People love to put the ole guilt trip on others!!!! ONLY YOU KNOW HOW YOU FEEL....stinks though, when you feel as though you have to prove just how sick and in pain you are to family members!

That is why it is great you shared here with us..WE GET IT!!!!!!!!!!!!!! Never hold back here...tell it like it is....we can take it...most of us have been there or are still there!

Oh, one more thing..my memory is still shot!!!!!! Don't feel bad!

Keep us updated.

Peace,

Lori

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I was diax with hypothyroid, then Hashimoto's (my immune system was attacking my thyroid), then thyroid cancer, then fibromyalgia, migraines, and salivary gland destruction from radiation, and now CM1. Yes - the symptoms all seem to overlap after awhile. I'm just at the beginning of fighting for a clear diagnosis and additional testing. The PAIN can be relentless at times. I had a so called migraine for over 3 weeks. When my head is not feeling like exploding, it has weird zaps and pains on the top, in the back, and numbness on my head and left side of my face. The symptoms have progressed a lot in the last 3 months.

I enjoyed your talk about getting back to the way you were. I wish I could do the same also. I used to work full time, raised 2 kids, did the afterschool activities, cooked, cleaned, played and still had time for myself. It seems like little by little my life transformed. As I think back though, I started having weird symptoms like falling down the last 3 stairs when my legs gave way for no reason when my kids were in their teens. A couple of years ago after radiation treatment I was watching my older boss playing volley ball at a school function and I wanted to cry... But I don't want to stay on my pitty potty for long because I am looking for answers and relief. I hate that people don't understand the pain. I hate that at times when my husband touches me it hurts and he doesn't get it, as if I'm making up what I feel. Fibro makes you tired, hurts, causes brain fog, makes you depressed, and causes other weird symptoms. Sounds like CM, but it seems like even the best trained doctors don't know how to handle the symptoms. Being drugged all the time also sucks, but when the migraine is going on full blown - it helps. Anyway, if the surgery would help with some of the symptoms I'll be a very happy person. :)