Mystery disease-Very Painful-Over 2 years-Need Help!

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Long story short- I have pain in my legs, hips, shoulders, back, arms, knees, wrists. Extreme fatigue and weakness. Shortness of breath and new unusual heart palpitations. This all started in my right leg and ankle and moved it's way up to my shoulder and then eventually to the left side of my body. First I limped, then I got a cane, then a walker and fear a wheelchair will be next. This all started when I was 28 years old. I am now 30 years old. I've had thyroid and reheumatoid arthritis ruled out from a specialist. They have found some impingements and nerve damage on my left shoulder, hip, and elbow. I never had any accidents. No reason to wake up with all of this one day: MRI showed lesions and perpendicular white matter on my brain. 1st neurologist did spinal tap and the test that electrocutes your muscles and shoves needles in your muscles and moves them around. Anyways they didn't see anything of great significance through any of them. The last thing my new neurologist has said was the lesions could be from mild MS or from anything... I could have been born with them. I've experienced weight loss, naseau, and intense brain fog. Ex. I'm looking at the orange juice and in thinking orange juice... then lemonade comes out for no unferstanfable reason. Sometimes I just forget how to text or type. Sometimes I will tell someone the same story 3 times and have no recollection telling them once. This scares me a lot but what's going on with my body scares me more. My doctor has ran tons of tests. I've done everything they've asked me too and still am nowhere near an answer. I am a single mom with 2 children. I work full time and I can't take days off when I feel terrible or my arms and legs don't want to work. I don't have that luxury. My kids see me scream in pain when I try to lift up my arms or take steps. I try to hide it's much as I can but is nearly impossible. They deserve to have a healthy mom who can have fun, laugh, and take them to the park. Physically getting worse is taking an enormous mental tole I me now as well. I've tried to be hopeful but after several years it's hard to stay positive. Not getting any answers and doctors trying to shove anti depressants down my throats is starting to make me depressed. What's aggravating is that they make me feel like I'm a depressed person and that the depression is causing these symptoms. I never had depression before this. All my life. Check my history! Everything that's happening to me physically is starting to make me depressed. If I didn't have children, and they couldn't figure this out. I'd be gone. Because being in so much pain and physically disabled out of nowhere is too much to deal with sometimes. I have the two sweetest, kindest kids in the entire world and would never leave them behind. Which is why I need some ideas and help to point me in the right direction to get better! Mayo Clinic called me for an appointment but they don't take my insurance and I don't have 6 grand for the initial appointment and routine testing. Plus if they don't figure it out with that, than you have to come up with more money up front to continue.I am so desperate to fix this. Please. Anybody?

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  • Posted

    I feel so sad hearing of your difficulties Jessica.  My heart goes out to you.  I understand the pain and fatigue syndrome without explanation, although I'm nowhere near in the awful position you are.  Have you thought about fibromyalgia or similar syndromes?  If there are no inflammatory markers to suggest RA or polymyalgia, there's a possibly it could be FMS.  There arent many treatment options available for these mysterious pain and fatigue syndromes unfortunately - mostly a case of trying out various pain meds and some anti depressants do work, even though it's not depression. There are also some anti convulsive meds which have had good effects.  Amitryptaline, gabapentin, etc., and even some steroids such as prednisone.   Also if Fibro is diagnosed you can get referred for Mindfulness sessions which also have a good track record for pain and the brain fog associated with FMS.  I so hope you manage to find something to help soon.  Have a look online at fibromyalgia and its symptoms to see if there's any match.

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    • Posted

      Hi Loxie,

      Thank you for the helpful tips. However they did rule out Fibromyalgia a while back. The rheumatologist tested me for that and checked out my thyroid. Sent me on back home.

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    • Posted

      Exactly the same here Jessica - rheumy said it wasnt fibro, hundreds of inconclusive blood tests later apparently my thyroid is not to blame, nor my vitamin D etc levels.  Had a couple of ultrasounds which found out I have rupture bicep tendons (rotator cuff injuries) but they dont account for pain elsewhere in the body nor for the devastating fatigue or brain fog issues.  Have been through the list with meds, which either dont work or have horrendous unacceptable side effects. 

      A very helpful and informative talk with a PT gave me some insights into triggers for this kind of problem, which I believe in my case is a combination of stress and my existing OA but I'm nowhere nearer to finding lasting or effective relief.  I'll keep trying anything I can.  I read everything I can about pain syndromes and keep hoping someone somewhere has a breakthrough.

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  • Posted

    Hi Jessica, Are you in the UK? If so please go & see your Gp,as this shouldn't be happening to you.Please get your self checked out properly. Regards Amanda

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  • Posted

    Hi Jessica

    I don't know whether this will help you I don't know whether this will help you i used this physiotherapy clinic they have a System where you can have one hour free telephone consultation if they can't help they will put you in contact someone who can help you they seem to have consultants at the surgery I'll give you the phone number speak to them see what they say

    Thanks for reading!

    Wimbledon Clinics

    53 Parkside

    Wimbledon SW19 5NX

    United Kingdom

    020 8944 0665

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  • Posted

    could this be polymyalgia, many of the symptoms I had, or could it be lack of Vitamin B12, that causes all of those problems, I have had the same ymptoms but live in UK, I defernatelyhad polymyalgia, good thing is steroids take all symptoms away and it does burn itself outafter a couple of years. the B12 is also something they can cure, just a thought, good luck.
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