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No diagnosis, a lot of pain and struggle

Nov 23, 2015 12:37 PM

I'm new to this app, but I started using it so I can chart my pain so my doctors can see it day by day. I have nerve firings that feel like I'm being stung by bees and they hit randomly in my body and randomly throughout the day. I also have occasional muscle spasms throughout my body and I have very bad joint pain. I always feel fatigued or my muscles feel very weak. My muscles are always achey. Sometimes my legs get so weak that I cannot walk or move without having to manual move my legs with my hands. My feet and hands get tingling in them and sometimes that weird sensation of them being asleep but lasts all day. I have been to several doctors including a neurologist and a psychologist. My symptoms worsen at night and when I get sick or stressed or over worked. The doctors have no clue what is wrong. A healthy, seventeen year old should not have to go through this stuff. All of my blood work has come back fine and my MRI was good as well. Does anyone else suffer from this or have any clue? I am going to see a rheumatologist in one week and if they cannot figure anything out, we are going to Mayo.

Nov 25, 2015 9:07 PM

Tmiller, welcome to our community! I'm sorry you are so young and suffering so badly. I'm 54 and have suffered from chronic pain since the 1990's. It sounds similar to fibromyalgia symptoms. I get muscle spasms in my legs at night, along with restless leg syndrome & hynocogic jerks. I have a muscle relaxer for when it happens. I also have fibromyalgia, sjogrens, hypothyroidism, and multiple other issues. When you research you will find various diagnoses share common symptoms. Look into fibromyalgia and if you think it fits you mention it to your doctor. It took five years of symptoms before mine was officially a diagnosis. Good yuck and I'll say a prayer for you! I'm sure many others will add to the post as they come to it. πŸ™πŸŒΌ

Nov 25, 2015 9:08 PM

PS... Check out a fibromyalgia website...


Nov 25, 2015 9:09 PM

OK, the link won't work, B it you can type in the link address. Sorry! πŸ™πŸŒΌ

Nov 25, 2015 9:13 PM

They said they don't think it is fibro, but we are trying to exhaust all of the rest of our options before looking into it more and then we will look more into fibro. They said it doesn't explain some of my weird issues I'm having.

Nov 25, 2015 9:14 PM

Me severe nerve firings are what is throwing them off.

Nov 25, 2015 9:15 PM

Have they tried to rule out MS, something in your spinal cord, any other degenerative neuromuscular diseases?

Nov 25, 2015 9:16 PM

They said that I have no muscle ridgity , so my neurologist (who is awful) said it's not that and that he thinks he doesn't need to check my spine. I go see a rheumatologist on Monday, so hopefully he will maybe suggest some more tests to be ran.

Nov 25, 2015 9:18 PM

I am so sorry that you have to suffer so. God has something big in store for you and is preparing you for that journey. Hang in there and we are here for you. Please let us know how you are doing. We look after one another like family. For some of us, this is our family.

Nov 25, 2015 9:20 PM

Thank you. This has been very difficult for me, and I'm very glad to have found a community who is accepting and understanding. I find it hard to talk to anyone because they cannot physically see any of my symptoms so most of then brush this off as I'm making it up.

Nov 25, 2015 9:22 PM

That's in the brain or the spinal cord. It can't come from anywhere else. It's anatomically impossible. The Drs should know this. Its anatomy 101! Tell your folks to look for another neurologist who deals with the neuromuscular diseases. Research nerve pain and you will find that it can only come from those 2 places.

Nov 25, 2015 9:26 PM

We are looking for another one, but it is very limited in my city. That is mainly why we are thinking of Mayo, since it is only a day drive.

Nov 25, 2015 9:27 PM

This is in the spine or the brain. The rheumatologist will be able to tell you yes or no on fibro, but no offense to Alwayz but it doesn't sound like fibro to me. This is neurological. I've spent 29 yrs dealing with the spine and the effects it can cause and I have MS, DDD, fibro, and chronic myofacial pain syndrome among other things. I also spent 20 yrs in the medical field. My gut is screaming neurological, and it's usually not wrong. I hope I am, and I can always hope I am.

Nov 25, 2015 9:29 PM

Just be careful there. They have this theory that chronic pain is because of repressed feelings or some crap like that, so don't let them pull you or your family into that.

Nov 25, 2015 9:30 PM

I really appreciate it. My gut also tells me something bigger is wrong then what the doctors seem to act like it is. My neurologist said, and I quote.. "It's just a phase, you will grow out of it."

Nov 25, 2015 9:43 PM

Sorry. It took me a few min of screaming and yelling at the universe before I was calm enough to answer you. If I'd been there, I'd probably have punched him. You need a pediatric neurologist. I know you are 17 but your brain is not fully developed and won't be for 5 more years. They understand the growing brain better than a regular neurologist. I'm sending prayers to you and your family.

Nov 25, 2015 9:59 PM

Thank you. Your support means a ton to me!

Nov 25, 2015 10:12 PM

You are very welcome. I'm glad you found this site and us.

Nov 25, 2015 10:20 PM

Me tooβ™‘ My mother is looking at pediatric neurologistso at Mayo clinic. The hard part is to get in quickly. It's so difficult going through this every night, and the faster we can get outside input the better.

Nov 26, 2015 12:43 AM

I would bypass the rheumatologist and spend my time at the Mayo clinic. They will treat you like a queen. You will go there and tell them your symptoms and they will order every test that will give them insight into what you are feeling. They won't hold off a test based on what they don't think. They take test to rule things in and out. What is nice is everything is scheduled and you don't feel like you are wasting your time. You truly feel like they are trying to help you get the answers you need. I have never found a mean Mayo clinic doctor. They may have not been overly friendly but never mean. I finially got the help I needed at the Mayo clinic after being broke for 4 years. I hope they find the answers you need.

Nov 26, 2015 6:00 AM

Im praying for you and hoping you get answers soon. 17 is too young as im 42 and think im to young for my issues. Doctors aren't God so its tuff. Hugs my friend

Nov 26, 2015 7:22 AM

You sound like me when I first started. My name is Dustin and I have been diagnosed with Autoimmune Autonomic Ganglionopathy or A.A.G. for short. Have you been checked for Autoimmune disorders? If not, you need to be tested for A.A.G., C.I.D.P, and MS. You need a lumbar puncture and blood work. Have you been checked for small nerve fiber neuropathy? If you do end up testing positive for Autoimmune Autonomic Ganglionopathy or others you need to have a PET scan right away to rule out cancer. Hope this helps.

Nov 26, 2015 9:26 AM

Thank you very much, all of you. And I had an ANA test ran because my half sister has Lupus. I do not believe they have checked for any neuropathy of any sort. They have ran extensive blood work, including all of my vitamin levels. I had an MRI but that is apparently clear. I mentioned a spinal tap to my neurologist, but as I stated earlier he said he doesn't think I need any tests done on my spine, besides him pushing on some vertebrae.

Nov 26, 2015 10:07 AM

My MRI of the brain has always been clear, and because of the degenerative disc disease there was no way to see the lesions in my spine. It took a lumbar puncture and 20 yrs for me to get my diagnosis of MS.

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