Discussions By Condition: Medical Stories

My LONG, ongoing story... advice requested...

Posted In: Medical Stories 2 Replies
  • Posted By: gemini0617
  • April 26, 2010
  • 00:26 PM


I am a 39 year old Female and in 2005 I was involved in an MVA. Since that time I have had nothing but health issue after health issue.

Immediately following the accident I began physio for back pain. I would walk in to my Physio appt and have to be carried home as i was unable to move my legs without major pain. It would take hours before i could move on my own again. I went to my physician and he referred me to a Rhumatologist who immediately diagnosed me with Fibromyalgea. Since then every pain and every issue I've faced in my health has been thrown into what I call "my Fibromyalgia bucket".

Over time the issues have increased to the point where I am unable to work at all. I have always wondered if there could be some other reason of why the following issues have plagued me:

1. Numbness, weakness and ache in my hands and wrists. I was tested for Karpel Tunnel and tested negative.

2. I lost my complete eye sight in 2007 for about half and hour, but lost peripheral vision for 3 hours. I as told it was migraine with aura.

3. I am constantly covered with hives all over my body. The hives mostly affect my low back close to the tail bone, arms, and chest, but i have had them in other places as well. My arms seem to worsen with exposure to sunlight. The hives seem to come in cycles and I am not aware of any cause to the trigger of a new cycle. I saw a Dermatologist who as unable to give me a direct answer even following a biopsy of one of the hives. The only thing he did say is it appeared to be a photosynthetic allergy and all I could do was take allergy medication. Problem is I can't take allergy meds as they all contain antihistamine and that triggers my RLS (restless leg syndrome).

4. RLS is another of the wonderful problems i live with. I have become somewhat experienced in dealing with it and avoiding the things that set it off, but that doesn't make it any more pleasant.

5. Dental problems - I began grinding my teeth and clenching to the point where I have done major damage to most of my jaw teeth. Now I am missing most of my jaw teeth and have problems eating hard foods.

6. I get random spasms all over my body.

7. My energy level is also rotational.

8. I get major pain in the back, base of my head when I laugh. I know it sounds funny but believe me it's not. When I laugh loud or hard I get a throbbing sensation in the base of my head that makes me begin to black out. It takes about 20 mins for the pain to pass, but by then I feel like I’ve been beaten up. It's especially scary when it happens if I'm driving.

In Jan 2010 I was involved in another, more minor MVA and I believed I was fine until the pain began to increase and new pains and issues presented themselves. Now I have the pleasure of added and increased problems including:

1.Constant clenching of my jaw, neck, face, head and neck. I’ve even had spasms where I’ve been unable to move my head or neck for days.

2.I have daily headaches that seem to come alive mostly as I sleep. They wake me up with intense throbbing and I’ve been unable to have any complete night of sleep.

3.I get the feeling of spasms in the muscles of my head. The pain is unbelievable and occurs at least 4 times a week, but quite often daily. I even have this constant feeling of a band around my head or spasm on the occipital area.

4.My migraines are now severe all out migraines that last for days.

5.I have done even more damage to my teeth in just this short period of time since the clenching increased. Now I’ve even chipped a front tooth and another rear tooth.

6.My eyes are sensitive to light, regularly get dizzy and find it hard to focus at times. (even with my new prescription of progressive lenses, glasses)

7.The body aches have more than doubled in their intensity and frequency.

8.My hands have gotten weaker and I always have pain and weakness in my right shoulder, but also sometimes in my left shoulder as well.

9.My sleeping patterns are all messed up and seem to only be getting worse. Some days I sleep most of the day away in short spurts, other days I can’t sleep at all.

I am now on 60 mg daily dose of Cymbalta with the hope of decreasing the physical aches and some of the symptoms. It seemed to be working for awhile but now I feel it’s losing its intensity and I’ve only been on them for two and a half months.

I am having a hard time adjusting to this new physical state and I am an inquisitive, determined person who doesn’t give up easily. I seem to have a habit of pushing which as of late has been causing more problems than help. I’m not sure what to do, or where to go for help. But I don’t want to give up.

Plus I did recently have an MRI of my neck, shoulder and head. The results from the shoulder were insignificant, but I’m still waiting on the results for the head and neck.

Any thoughts or suggestions would be greatly appreciated. I’m too young to be stuck living like this. There has to be something I can do to get my life back.

Thank you….

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2 Replies:

  • Hi, was wondering if you've ever had any other health problems prior to the MVA. Specifically allergies. Not sure if I can help but I might be more help than doctors. I have a very rare autoimmune disorder that was caused by an undiagnosed genetic condition that I was born with. I'm allergic to my own hormone, Progesterone. I would randomly break out in hives and have done this for 24 yrs up until I started going into anphylaxis every month. I'm also allergic to my own sweat and for the last 3 yrs I have had some reactions to the sun. The genetic condition is called histadelia, it's what caused my autoimmune disorders. The histadelia (unusually high histamine level- IgE) caused me to become severely autoimmune because the my high histamine caused my immune system to think that my hormones and sweat were foreign, like an allergen. Doctors do not recognize histadelia as a medical condition and they don't test or treat without the test being demanded. The test is an Ige blood test. The reason I ask about the allergies is because minor allergies can turn into severe constant allergic reactions when one has experienced trauma or significant stress. It's a vicious cycle. Histamine is a neurological transmitter, and any damage or trauma to the nervous system (auto accident, stress, trauma, PTSD, etc) could trigger a huge increase in your histamine level causing you to become autoimmune. You might want to keep track of the timing of the hives, if your pain becomes worse when your broke out, journals of everything. This is what I had to do. My hives used to occur starting anywhere from 3-10 days before my period and start to subside a few days after. Then I started going into anaphylactic shock from nervous system and liver damage caused by a prescription drug. The pain from my high histamine was excruciating starting with burning at the base of the right side of my skull and then migrating down my right arm, shoulder blade, joints, until it was everywhere. It was painful to walk to the bathroom and burned everywhere. I also have the jaw clenching and teeth grinding when my histamine is super high. Migraines, etc, our symptoms are very similar. Stress, pain, trauma, fear, all flare the immune system and raise histamine levels especially if you already are predisposed to various allergies. Story of my life and docs have really been of no help except testing to get diagnosis. I had to do all my own research, demand various tests, and even develop my own treatment. My full story is on hubpages.com. Links are below:Not sure if any of this will lead you in the right direction but you sure do sound an awful lot like me with the pains, headaches, hives, etc. I have seizures from antihistamines now and also had migraines with aura. I still suffer parasomnias (mini seizures while I sleep, especially falling asleep) from PTSD. Things are getting so much better so don't lose hope. I would certainly find out if you have any nerve damage in your neck/back, get an IgE test, and an ANA test done. My ANA was never super high, just mildly abnormal but my IgE was high and so are all 3 of my kids'. I was born with scoliosis (curvature of the spine) and am honestly not sure if that plays a role in my nervous system and high histamine. My children do not have the curvature of the spine but they still were all born with high histamine and each having a vast array of different symptoms. Weather, food, lotions, shampoos, soaps, seasons, stress, anxiety, pain, emotions, all trigger different symptoms in each. Some are mild and some are not causing illness for days and even weeks sometimes. Hope I've been of some help!
    Anonymous 42,789 Replies Flag this Response
  • Hi, I am a 39 year old Female and in 2005 I was involved in an MVA. Since that time I have had nothing but health issue after health issue. Immediately following the accident I began physio for back pain. I would walk in to my Physio appt and have to be carried home as i was unable to move my legs without major pain....If I were you I could take 5 mg tryptizol every night. Some times it works and at least, there is not danger at the 5 mg low dose.
    Dra. Cole 1 Replies Flag this Response
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