Trying to find a diagnosis. Help?

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Emspo

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Oct 19, 2021
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Hi all.
I feel awkward posting but I'll give it a shot. I used to be an athlete. Mostly running and some weights. But over the last year, something has changed. About 3 months ago I noticed that when I was laying down at night, the muscles in both of my calves and feet would twitch. Sometimes for an hour or two. It didn't hurt it was just weird. Then about 2 months ago the pain started. It's like a deep, throbbing pain in both lower legs. Then it involved the side of both hips and into my buttocks. Now my right forearm has that same deep ache/pain. Sometimes my left one. I lay in bed and different parts of me just throb with pain. And last week the headache moved in. Near constant headache with all the other pain.

My doctor ordered a brain MRI to rule out MS and an EMG to rule out ALS. I'm waiting on results now. I'm not sure about MS but I know about ALS. It doesn't usually present as widespread body pain. It's more like losing the ability to balance, or properly move a limb. It's still terrifying to be tested for it. But I don't think this fits.

My question is, if MS is ruled out by the MRI and the EMG is normal so they don't think it's MS, what kind of doc do I talk to about exploring Fibromyalgia? I am so sad and in so much pain. I don't know much about Fibro but reading a bit on here makes me think I should explore it.

And a weird note about my pain. So much of it feels like deep pain, in the muscles, just throbbing. But other places are different. Like I push gently on the side of either of my hips, more toward my the muscle along the side of my butt, it hurts like there's a massive bruise there. But there isn't! I'm not talking about joints but the big muscles themselves. With gentle pressure, there's a sharp pain like I'm pushing on a bruise. The same thing happens when I gently push on the muscle behind both knees, leading up to my thighs. It's so unsettling.

Anyway, this was too long. I apologize. If anyone read all this, thank you! And also, I'm curious what you think.
Thank you for your time. :)
 

sunkacola

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Your post was not too long, and you are welcome here. I am just sorry you had to come here.
I suggest you see a rheumatologist next, so as to check for that.

Basically, fibromyalgia is a diagnosis of elimination, so they have to rule out everything else before giving you that diagnosis. It's a big hassle and takes some time but that's the only way since there's no test that shows the presence of FM. What you escribe could very well be fibro, but without going through the diagnostic process you cannot know.

We here understand the pain and the sadness and the great feelings of loss when you can't do what you used to do.
But take heart.
It may not always be this bad if it is fibromyalgia, and unless you get diagnosed with something else that is degenerative, it is more likely to get better than to get worse if you learn how to manage it for yourself. We can help you with that, and in the meantime we can cheer you along while you go through this process of finding out what is going on.

Come back and let us know how you are, and what the test results and doctors say. You don't have to face this alone.
 

Jemima

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Hi Emspo,

There's quite a few of us here in the forum with an athletic background - I relate so much to how frustrated and lost you must be feeling. As Sunkacola said, going through the diagnosis process is a necessary evil, and I wish you luck in getting to the bottom of what's going on. If you do land with a fibromyalgia diagnosis, come back and see us again. It really helps to talk to others who have gone through the same process and challenges, and while fibro does change things, it is amazing how we can evolve and find a sense of empowerment that just looks a little different from the prior version! Good luck with everything.
 

Gardener

Member
Joined
Jul 14, 2021
Messages
19
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
Hi all.
I feel awkward posting but I'll give it a shot. I used to be an athlete. Mostly running and some weights. But over the last year, something has changed. About 3 months ago I noticed that when I was laying down at night, the muscles in both of my calves and feet would twitch. Sometimes for an hour or two. It didn't hurt it was just weird. Then about 2 months ago the pain started. It's like a deep, throbbing pain in both lower legs. Then it involved the side of both hips and into my buttocks. Now my right forearm has that same deep ache/pain. Sometimes my left one. I lay in bed and different parts of me just throb with pain. And last week the headache moved in. Near constant headache with all the other pain.

My doctor ordered a brain MRI to rule out MS and an EMG to rule out ALS. I'm waiting on results now. I'm not sure about MS but I know about ALS. It doesn't usually present as widespread body pain. It's more like losing the ability to balance, or properly move a limb. It's still terrifying to be tested for it. But I don't think this fits.

My question is, if MS is ruled out by the MRI and the EMG is normal so they don't think it's MS, what kind of doc do I talk to about exploring Fibromyalgia? I am so sad and in so much pain. I don't know much about Fibro but reading a bit on here makes me think I should explore it.

And a weird note about my pain. So much of it feels like deep pain, in the muscles, just throbbing. But other places are different. Like I push gently on the side of either of my hips, more toward my the muscle along the side of my butt, it hurts like there's a massive bruise there. But there isn't! I'm not talking about joints but the big muscles themselves. With gentle pressure, there's a sharp pain like I'm pushing on a bruise. The same thing happens when I gently push on the muscle behind both knees, leading up to my thighs. It's so unsettling.

Anyway, this was too long. I apologize. If anyone read all this, thank you! And also, I'm curious what you think.
Thank you for your time. :)
Sorry you are going through this. It’s difficult not knowing what’s going on. I too had a gradual onset of generalized fatigue, pain, and brain fog.
My skin would hurt to touch all the time. I lived with these symptoms for decades. I fought through the illness. I was into surfing and fishing until the symptoms took over. I had to quit my job as a RN at cedars because the pain was just unbearable. I stayed home for 4yrs on pain meds and was only able to just take care of my son who is now 9yrs old. It was a terrible time. Pain meds was getting very difficult to get so I decided to see a new pain doc at Torrance. Dr. Sami introduced me to LDN-low dose naltrexone. I had to quit all pain meds to start LDN. With in two months on LDN ALL my SYMPTOMS are gone. Look into it this miracle medication. LDN Trust website has a lot of information.
 

Gardener

Member
Joined
Jul 14, 2021
Messages
19
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
Sorry you are going through this. It’s difficult not knowing what’s going on. I too had a gradual onset of generalized fatigue, pain, and brain fog.
My skin would hurt to touch all the time. I lived with these symptoms for decades. I fought through the illness. I was into surfing and fishing until the symptoms took over. I had to quit my job as a RN at cedars because the pain was just unbearable. I stayed home for 4yrs on pain meds and was only able to just take care of my son who is now 9yrs old. It was a terrible time. Pain meds was getting very difficult to get so I decided to see a new pain doc at Torrance. Dr. Sami introduced me to LDN-low dose naltrexone. I had to quit all pain meds to start LDN. With in two months on LDN ALL my SYMPTOMS are gone. Look into it this miracle medication. LDN Trust website has a lot of information.
I started with 4.5mg for one month but had lingering symptoms. Doc increased to 9mg and that knocked to out of the park!! I have read some doctors taking it as a preventative medication. Good luck!!
 
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