I have some horrible problem, and I dont know what to do.

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Signal
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/16/2012 11:51 AM (GMT -6)   
first, hello everyone. I'm new here..

This is akward. so I'm just going to post it. Please bear with me.

From the day I was born, I've had some sort of problem. Any time anything touches me anywhere, it causes extreme pain. This includes anybody else's touch anywhere on me, my own touch on most places, and even things as absurd as my hair being gently blown against my face. These things are painful, to the point where my muscles will start to convulse if i move my hand anywhere on my torso (though especially the sides.) only subsiding when i remove my hand.

Some time last year, I suddenly comprehended the consequences of this in a single moment: I will enver be able to enjoy even something as simple as a hug. Because thats how immensely painful it is.

I'm worried. I know howi mportant human contact is, and I know how much I desire it but..it causes intense physical pain, always. Without exception. Painkillers do absolutely nothing for this. Nothing does anything for this. I dont even have a name for it, all I know is, its not going away. And that makes me feel like my future is meaningless. I cant afford either a neurologist or a therapist to help me cope. I have no money because, well really, working is next to impossible. It feels pointless.

And thats it basically. pain over 100% of my body, for my entire life, all touch feels like glass or gravel or something. it hurts so badly.

I try to stay optimistic. really, I do. I never hate my life, though I do hate this thing thats screwing it up. I should say, things. Ive also been diagnosed with a minor mitral valve prolapse (Which makes me nervous about a heart problem which induces panic attacks which make me tense and strain which causes chest pain which...yeah. The problem itself does not cause pain to a notable degree.), some sort of bowel disorder, and something thats in one of those autism specturm dealies.

so, as for my question... "What now?" What do I do now? This question has kept me in stasis for over a year, and it shows no sign of letting up. And its just so exhausting.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 1/16/2012 12:01 PM (GMT -6)   
Good morning Signal
I wanted to welcome you to our chronic pain forum. Glad you found us but so sorry that you are suffering terribly. You will enjoy the members here. They are so caring, understanding and non-judgemental. We all suffer with some form of chronic pain, so we do "get it". I hope you will continue posting here with us.
 
In reading your post it made me think of one of our moderators here who has CRPS. She will be along and give you so info. But I know those with this disorder have terrible pain just by the touch. So we'll see what she has to say on this.
 
Perhaps you can tell us what types of doctors you have seen, meds you have tried and are on and other forms of treatments you have tried. That way we will be able to give you some guidance.
 
Welcome aboard.
Suzane

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 1/16/2012 12:21 PM (GMT -6)   
Does this extend to your hands and feet?
When standing, does this put your soles into severe pain? What about your fingertips when typing?

Eating? Does food touching your lips and tongue pain? Sitting? Clothes?

Or is the pain limited to just some areas? If some areas are unaffected, it may be diagnostically relevant. What sort of doctors have you seen? Have you tried lyrica or gabapentin?

BTW, I too have mitral valve prolapse. Might your panic attacks be related to a form of tachycardia? If so, then a calcium channel or beta blocker may do wonders. I take the former daily and have now for almost 15 years. During my early 20's, I was having more and more episodes of tachycardia. They eventually became daily, and even multiple times per day. I finally saw a doctor when I was 30 and regret not having done so years earlier.

If you have not had a halter monitor test, you should speak to your GP or cardiologist.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 1/16/2012 4:24 PM (GMT -6)   
Check with your Primary care doctor and then get a referral from him/her to a cardiologists
and get an echocardiogram and ekg done to rule out heart problems, then after that then maybe
look into it being fibromyalgia as fibro can cause wide spread nerve pain, and if it is nerve
pain then no regular pain medicines won't give you much relief...but first seek out help with
a cardiologists to rule out the heart problem, echocardiograms as easy to get thru and don't take long,
but they do press down on the chest somewhat, but nothing to be nervous about....
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 1/16/2012 4:38 PM (GMT -6)   
Please make sure you have good health insurance as in the USA an echocardiogram
is very expensive and most insurances cover it at 80% if it's done in a Hospital
the charge will be over $2,000 for a 5 to 10 minutes test, then deductable applies
so last year our daughter had her's and the hospital charge over $2,000 which
we had to pay 20% of plus $750 deductible, but this test will pick up on heart problems
if that is suspected...many well wishes and do keep us posted...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 1/16/2012 4:51 PM (GMT -6)   
I mentioned the pain from being touched to my wife and she said she knows someone who had this problem, though it was intermittent. It turned out to be a vitamin B deficiency. I'm not sure if that possibility has ever been brought up in your case -- if not, perhaps try a B-complex supplement every day for a few weeks and see if it helps.


My wife also noted that many people with autism avoid being touched. So that offers another hypothesis. However, autism's "sensory integration" issue is more a hypersensitivity than a pain.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 1/16/2012 5:44 PM (GMT -6)   
I know that you have said that pain killers do nothing for you, but have you tried medications such as Lyrica, Cymbalta or Neurontin.

These medications are often prescribed to treat nerve pain and/or non specific pain such as Fibromyalgia type pain.

As far as not being able to afford to see a specialist goes talk to your area hospitals about their charitable care programs. Many times these programs will extend beyond care received at the hospital and include any care you might receive by doctors who are employed by the hospital.

Finally while the name brand medications I named are somewhat expensive their manufactures have programs in place to cover most or all of their costs for people who do not have insurance and can not afford them.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.
Moderator Depression Forum.

Ssinss
Regular Member


Date Joined Jan 2012
Total Posts : 66
   Posted 1/16/2012 8:44 PM (GMT -6)   
Have hope, did someone up in the posts suggest a neurologist? Probably. I wish you the best of luck in your search. I would not consider this something awkward, but important and something you should address with confidence and assertiveness. Each of us, I believe, has had to make a stand at some point to get the care and diagnosis we all desire. Oh and check for sliding fees! Many places have them. AND! many places offer help for medications and treatments that I am sure many people in this forum have either found, noted or used. Just put a post out if you get to the point of needing that kind of help.
Abdominal surgeries 7ish (C section x2, Hysterectomy, Laprotomy due to scar tissue, left Colectomy, ventral hernia repair,MRSA, Ventral hernia repair removal, MRSA. Ventral hernia repair laproscopic, last surgery left a hole for months that needed to be packed. The last hernia repair was a placement of a Large abdominal mesh with unusual sensitivity to the tacks.

Pharm Girl
New Member


Date Joined Jan 2012
Total Posts : 15
   Posted 1/17/2012 6:01 PM (GMT -6)   
Hi Signal,

I am so sorry to hear of your suffering. I think the advice for finding medical treatment through a charitable program would be a great first step. Many states have free health care for indigent people on county levels. Also, if you apply for disability you get medical care while your case is being decided.

I hope this helps. Hang in there and best of luck!
Janet
A higly intelligent, highly pissed-off college graduate with a lot of free time on her hands, now advocating for change to current pain laws and policies, who suffers with TMJ, Cervical Displacement, Degenerative Disk Disease, Hip Bursitis, Herniated Lumbar Disks, and a Pinched Nerve with associated neuropathy.
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