Chronic pain everywhere + twitching

Posted , 12 users are following.

Hi, a friend of mine is dealing with pain everywhere, and I mean everywhere and we don't understand what he has. He has seen many doctors, taken many tests (CT, MRI, fMRI, EEG, EMG, PET, MRA) and they still havent detected anything odd. Along with that, he has taken X rays everywhere and has tried a ton of different treatment to help with the pain but nothing works. The only thing we know, for certain, about his body is that he had developed carpal, cubital tunnel syndrome, and an ulnar entrapment on both hands 10 months ago. Doctors call this a "Triple Crush", denoting its severity. 

Here's the story: 10 months ago, my friend, Chris', hands began twitching (no, not tremors) I don't know if it started with a finger or two. All I know is that it was twitching on and off, and that all these twitches would come and go throughout the day until they became constant (like in a jerking manner).

Chris is a drum teacher so he assumed it was due to excessive drumming so he stopped drumming and simply just went to a doctor. By the time he finally decided to go to a doctor, it had been about a month after the first pain and twitches and had already grown to his arm. When he saw his doctor, his doctor gave him pills to stop the twitching and recommended him to many different neurologists (great ones in the area). After he took all of those tests (the ones listed above) and received results (took a month or two by the way) the doctors didn't seem to know what went wrong.

After about 4-6 months since it all started, his twitching widespread all over his body (only his arms were somewhat constant), but it occured everyday, sometimes even multiple places at once. (EX: leg + arm or foot+hand) But the biggest issue, even though the twitching was embarrassing and made people look down on him, was and still is his PAIN!

IN ALL: His pain started a week into this so he's been dealing with it for about 10 months now, first his hand, then his arm (including shoulder), later his hips, then his legs and feet. All of this physical pain took a toll on his stomach though and the stress eventually caused countless headaches. The pain, in all, is now constant, but after testing 3 different types of pills for twitching, the twitching stopped in the 7th or 8th month but it recently came back slowly.

The pain used to just move around those areas, sometimes top of his shoulder, shoulder blade, collar bone, etc..and happen hourly, (always there though) but now he feels all the pain all at once. This has caused him problems because now he can't teach drums, play drums, hold bags or boxes for too long. Actually, he can't even hold a carpet. Its not just a weakening of his muscles due to inactivity though, he can't walk for too long now. He went from an active lifestyle to having to sleep early to stop dealing with the pain and no, it isn't easy to sleep. Chris always had problems with sleep but now, the pain causes him to stay up longer than usual (no, he hasn't had a sleep study yet) Because of all of this, he is becoming depressed. His mentality now is that when you're in pain all the time you just don't enjoy doing anything you normally did; you're not allowed to have fun anymore (your body won't let you). 

My biggest concern is that he has wasted thousands of dollars on different treatments and tests and the only thing doctors concluded was that he could have Neuromytonia, but they took that diagnosis back two weeks after telling him to take more tests (this discovery was made in the 7th month).

I have read many different cases similar to this, like that of HunterD, but they all eventually stop posting and commenting on their condition. I just need to know if there's anything else he should do because I don't know how long more he will be able to take this.

1 like, 21 replies

Report / Delete

21 Replies

Next
  • Posted

    Jessica27672,

    I sure hate to hear this news, that's awful, poor fellow. I sure wish that I had something to say that would help but I just don't know. I have never heard of symptoms like this, but I had never heard of what my son has been diagnosed with until he was diagnosed. I sure hope someone with some knowledge of this will reply and help this man. Please keep us updated on the condition this man is going through. He's in my prayers and may God put his arms around this special man and give him peace and splice. I pray that healing of this man begin now. God bless him and God bless you for being such a strong friend....

    Report / Delete Reply
  • Posted

    The first thing your friend needs to do is ask his GP for a referral to a pain management specialist.

    The PM dr will be able to help him control his pain so he can have some restorative sleep.

    I am sorry that your friend is having a rough time of it. I'm sure the diagnoses will eventually come.

    Just stay by him and give him all the support you can.

    Report / Delete Reply
  • Posted

    Well, first, let me explain the limitations with imaging studies...imaging is done in positions that may not allow the problem to be visible...meaning if pain is aggravated by movement and it sounds like it is then imaging can be pretty worthless in that scenario since imaging is done with the patient in a freeze frame...Second, Doctors are always looking for problems that correlate with what they do...for example if you see ortho they are looking for a problem with a joint that potentially needs their surgical intervention...and when they can't find a problem that correlates with what they do they are at a loss...doesn't mean the issue isn't real...it stinks and many patients find they have spent thousands and no real answers....here is the good news...what imaging can do is rule out anything serious given the Doctors didn't miss anything...if a full workup has been done and no answers...So...here is a bit of information...let me tell you what imaging can't see...functional musculoskeletal issues that can lead to all kinds of widespread pain...I would look into muscular imbalances possibly messing up the biomechanics of the shoulder, causing thoracic outlet syndrome(can happen with repetitive movements like a a drummer), pelvic tilt resulting in uneven distributions of weight on lower extremities...I had muscular imbalance and it is very painful as there are a lot of sensory receptors in the fascia that covers every muscle like a sleeve and when muscles clamp down they can squeeze on nerves, blood vessels and start a vicious inflammation, pain, spasm cycle... it can cause involuntary muscle twitching...(these twitches should not be convulsive in nature...if they are seizure like please ignore this post as this would mean there is something going on on they haven't identified yet)I got the best results from a physical therapist trained in muscular imbalances....I would look into it...what else does he have to lose except more money and his quality of life.

    Report / Delete Reply
  • Posted

    Hi jessica27672

    Has Chris had an Erythrocite Sedimentation Rate blood test? (ESR). An ESR testsfor inflammation in the body. If the rate is high then it is inflammation that is the cause of all his pain and can be treated.....arrange with your doc to get this blood test done...best wishes for an end to your friends pain...and just to say what a loving and caring friend you are Jessica.......

    Report / Delete Reply
  • Posted

    UPDATE!

    Chris has met with my chiropractor. My chiropractor focuses on the nervous system and adjusts with machines rather than cracking necks and backs. We have evaluated all the nerves that have problems and are working on them. Chris has visited him 4 times and will continue visiting him 3 times a week every week. For the first time in this entire time, he woke up and was able to get out of bed without enduring agonizing pain. Thank you for the support and advice! We are still looking into all of your suggestions!

    Report / Delete Reply
    • Posted

      Hi Abby, not much yet. We are still hoping for some progress with our chiropractor. Our chiropractor believes that the two main spinal bones in the neck that connect to the head are causing some problems with my friend's body. He believes that the symptoms occur due to poor communication between the brain and the rest of the body. We are currently researching about the pathways and seeing if there are any hiccups we could detect but for now, we are just sticking to chiropractic adjustments. There was a decrease in the excessive twitching and the pain minimized enough for him to be able to get out of bed quicker than what he would, but so far, those are the only signs of improvement. I will let you know if we find anything else. Best wishes to you and please don't give up hope.

      Report / Delete Reply
    • Posted

      Hi Abby!! I found out the type of chiropractic method that our chiropractor has been doing with Chris. It's called "Chiropractic Subloxation". I suggest you look for chiropractic doctors around your area because Chris has been doing great. He isn't completely healed but it's a great start. I wish the best for you. Best, Jessica

      Report / Delete Reply
    • Posted

      I have had many of Chris's same issues for YEARS. I will be looking for a chiropractor who specializes in this type of therapy. I'm do despondent and tired of being told "fibromyalgia" which makes me nuts. Thanks for posting.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up