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Mcozy33

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I am not sure what is going on with my but let me break down my experience. I would really appreciate any feedback that you guys can provide.

My symptoms started in October 2014.

I am a 33 year old female. I was experiencing extreme neck and shoulder pain, in addition to hand and arm pain that I thought was resulting from a writing intensive job. I was also experiencing headaches that were non-responsive to pain medication.
My GP sent me for a neck ex-Ray which showed straightening of the cervical lordosis. The doc thought my issues were a result of that and sent me to PT and Neuro to double check my headache issues.
Neuro examined me and sent me for an MRI of brain and CT scan of face. Both came back clear with exception of osteoarthritis in jaw. Neuro sent me for a million blood tests to make sure no auto immune disorder. Checked thyroid all that good stuff. I was also seeing a Chiro who helped immensely with neck and shoulder and arm issues. Around that time I started noticing muscle twitching all over my body (October/November).
I googled it and of course came to ALS. I spoke to my Neuro about it but he seemed unconcerned. Did an office exam and told me that he believed that it was stress. At this time I was also experiencing muscle soreness throughout my entire body. Like I had worked out really hard, but hadn't done anything. I went back for a follow up visit with my neuro and he said he suspected fibromyalgia and wanted to run some blood tests for that. He then went on a three mont vacation.
During that time I saw two additional Neuro's who both did NCS and and EMG on my arms, both also suggested fibromyalgia, anxiety, BFS. I continue to twitch and continue to be in pain. I cannot shake the feeling that I have ALS.
I have little twitches in my face, and my pain seems to vary from excruciating to somewhat bearable mostly in my back neck and shoulders, but my whole body generally feels sore most of the time. I also sometimes feel disoriented, and my memory is just garbage (kind of always has been). I have not reached an official diagnosis of fibro, but I think that is the direction that we are headed in.
I feel so crazy, and I just want to know what is wrong with me. Does this sound like fibromyalgia? Anyone experience anything similar?
Please help!
 

Mcozy33

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I also have tingling all over my body from time to time. It almost feels like I am getting chills all over. My hands hurt and ache much of the time particularly my dominant hand.
 

cmetryme

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Mcozy33, welcome to the forum.

First id like to say im not a doctor.

I experience the symptoms you are talking about. just not the headaches. folks here do have them.

if it was ALS the millions of blood tests would show it. thats why your doctor is not worried about that.
you can stop worrying and reduce your stress level so that your pain level can be reduced as well.

to me it is looking like fibro.

the twitching is the nerves not the muscles.

the osteoarthritis is very painful and that is a different pain than the nerves. thats why its hard for your doctors to say it fibro.
the neck? did it show osteoarthritis as well? that will travel down the arm nerves too.

the muscle spasms you are having are also happening at night while you are sleeping. making it feel like you have run a marathon.
you should be on muscle relaxers for this. if you are on them already, they are not working for you.

I have the same muscle issue and i have Spasticity. hurts like hell and will make my legs shake and move up off the bed on their own.

I want you to keep your cell phone with you at all times.(wear it around your neck) this is important. My legs gave out on me in the back yard and i could not stand up to get in the house. i left my cell phone in the house. i could not call for help. please take this very seriously. i feel this will happen with your legs too. now it may not happen to you at all.

Now i want you to go to General discussions on the forum. find my two posts called " what is fibromyalgia" and "starting a daily log book and why it helps".

they will explain to you about the nerves and muscles. start the log book right away. this will prove to your doctors that the muscles relaxers or other meds are working or not working.

At this point i would start a treatment plan with my doctor for the fibro. start the stevia not sure its called that and see if it gives you help.
you may be better with cymbalta. your body will tell you what is working best for you.

you can always stop the treatment plan if it dont help you. better to try something then do nothing and suffer with the pain.

I would like you to try a CBD salve or lotion($35) to help relive the pain from the pins and needles in your hands. works for a few hours and you can reapply it a few times a day. then none for a day or two and apply again. links are not allowed so you will need to go to setting and allow private msg to get the link i can provide you for the trusted place i buy it from.

do a search on the top of the page for private messaging. 1sweed put out the instructions to help you do this.


i hope i have helped you today. please friend me and msg me if you want the link for the CBD.
 

Mcozy33

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Thank you! Your insights are so appreciated!
I thought ALS did not show up in blood.
Also, no arthritis in neck. So far just found in the jaw, but it runs in my family so I wouldn't be surprised if it was elsewhere. The Chiro identified trigger (not tender) points that were attributing to my arm and hand pain. I am currently on no meds whatsoever. I was in muscle relaxers for a hot minute, but they really didn't do anything to ease my pain.
Exercise has helped a little bit, I was also on Zoloft for OCD for a couple of months as that seemed to help as well.
 

cmetryme

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DX FIBRO
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the chiro found trigger points? what did you doctor say about those points?
if that muscle relaxer was not working you needed to try something else.
as it wont go away you need to do something or learn mediation and breathing exercises to help.
 

Mcozy33

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Yes. He worked a couple of areas under my armpits that would send shock waves down my arms, but after he worked on them for a little bit the pain would ease up. He also did some ultrasound work on the muscles in my neck and shoulders that had me walking on clouds after I left. The pain relief was short lived. Stress seems to be a huge trigger, and anytime I have been working at my desk all day.
 

cmetryme

Extremely helpful member
Joined
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Messages
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DX FIBRO
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try the mindful mediation please. try to stay calm and take breaks and meditate on those breaks.

less stress = less pain.

less pain = happy mcozy33

happy mcozy33 = happy family members~!
 

Mcozy33

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I'm also going through a detox process right now that has been a huge help!
 

moe1959

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Every day seems like a new symptom. Please don't give up! Keep go forward with your Dr's and if one won't listen try another, if your insurance will cover, why not.
I de idea to really keep track and so I'm an open book. Yesterday was good I actually got out of the house and worked in our nursery....garden that is.
Today, I'm a bundle of nerves, I don't drink but really think I might start. I suffer from anxiety, post tramatic syndrome
That I thought was healed but obviously not, just numbed with Benzos, THEY WERE LIKE REALLY scary to detox, just one day my Dr. (Not one I would choose). Just said well its time you get off these, I was up to 4 mg. A day. I'm way past the having to have them, but on certain days, I certainly wish I had one for my own sanity. Won't bore you with details.
So be safe, hang on, and tie a knot at the end of that rope.
 

moe1959

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O my gosh, detox is awfull, and needs to be done by a professional especially if it's any benzoes.
 

Mcozy33

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Does not sound like fun!
I am doing a body detox right now, just trying to get the toxins that are mostly found in my food out of my body. I was having s great day until about 30 mins ago when my hand started to cramp up while I was holding some documents at work. I keep coming back to the obsession that i may have ALS. Anyone notice cramping in fibro symptoms?
 

nascarmike

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Mcozy33 I hear you on those spasms, worse than the pain sometime. They will make my whole body contort. Only things that work are hot baths/showers and cannabis.
 

nascarmike

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i detoxed myself off of a bunch of meds. It SUCKED!
 

moe1959

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Today In fact I had sudden extreme cramp in my right calf, I literally had to pound on the floor to get rid of it.
Quite scary. I've had cramps before but to like this.
 

Ruralchick

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Magnesium, esp. "Natural Calm" stops the cramps for me. As a side benefit, it can help with constipation, as some of the drugs have that ability. It is a powder, (mixed with water), that works very quickly. The dose is totally up to the individual. I had to start off at a much lower dose and it was enough. Also, when really bad, you can take more. I used to have the most obscene cramping from the inside of my knee up to and including the groin.
 
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