Central nerve pain and PN

[candice-marie88]

My PN pain returned in min feb this year and my life is spiraling out of control

After falling and hurting the area i developed severe pain for around a week. I then began having terrible headaches and extreme pressure all around my head, neck and ears. The PN pain reduced and I thought I was getting better, however, this was not the case.

I woke up feeling sick and dizzy one morning and my head wasnso tight and painful it was unbearable. Although my headaches have reduced now I suffer from many different symptoms each day, including:

dizziness and blurred vision - objects appear to flicker, double vision, eye strain and dots/floaters
tingling in random areas of my body
constant shaking - feel as though my whole body is virbating and my hands and legs shake uncotrollably
itching and burning on my skin, especially when touched
numb felings
spaced out - my surroundings appear to be unreal and blurry
naseaous
hot sweats
feeling as if im going to pas out
popping and muscle spasms
twitching
pain on my pulse points
heart feels as if it is thudding irregularly
breathlessness
unsteady, balance is affected

I hav visited our different doctors regarding this issue and explined the fall i had and pain i experienced in the area. Since i have never been diagnosed with PN or any pain disorder, I am being prescribed meds for stress and anxiety issues. Yes, I am an extremely anxious person, but the anxiety developed when the pain initially began over 4 years ago. I explained everthing to each doctor and wrote all symptoms down, however, i am continuously been told it is stress related and the pain i pyschological. I am not sure of what to do because my whole body feels out of control and I feel strange every minute of every day - i fear I will end up with permenant never damage to my central nevous system. I am 23 years old and my life has been seriously affected by this, i cant exercise or my symptoms become worse. I am not sure what to do.. does this sound like my central nervous system has been damaged? what will happen to me if i dont get the help i need? will i ever be cured and lead a normal, happy life again?

I seriously feel as if i am slowly dying, this is like a disease eating away at me, and there is absolutely nothing i can do to stop it, its so out of control and i am so scared. I am extremely depressed and have had many thoughts about suicide, which seems to be my only option now... i need to espace this misery, life is not worth this!!

[catherine a]

Candice Marie, you need to seek help with a pain specialist and psychologist. Ask your GP to refer you. Most of us at some time felt the way you do right now, that suicide was the only option and life wasn't worth living. But this pain is like a season, it will change. You are more fortunate than some of us by being young. Your body is more able to heal than those who are older but you need to get proper treatment. Don't give up and please do go back to your GP regularly and ask to see a pain specilasit and psycholgist. A good psychologist will help you deal with the emotional anguish of being in pain. Keep in touch with these forums as we fully understand how you feel. Keep yourself a journal so you can read it to your doctors. It is very helpful to them. If you're having pain in the PN region ie. pelvic floor, genitals, rectum etc. please look for a PN aware doctor in your area.
There is a list of doctors and phsyios. on this website.

Don't ever give up HOPE that you will get better but it will take time. Try to calm down and relax a bit more. You are not going to die, it's pain and it can be controlled.
Keep with us, we're here to help and support you.

Catherine

[susibee]

Candice Marie,

I just wanted to let you know that I am thinking of you and wishing you well. I am glad the PN pain has reduced somewhat, and the headaches too. I'm sorry you are now struggling with so many other symptoms - the shaking, dizziness, numbness, spaced out feeling, and all the rest.

Good for you for writing down all your symptoms and seeking out appointments with more than one doctor. It takes a lot of research and effort to get help. You might see 5 doctors (or more) until you find someone who "gets it."

Can you give us more specifics about what's happened so far? For example, what kind of doctors/clinicians have you seen (pain specialists, GYN, PN specialist, physical therapist, psychologist)? Has any doctor recognized or diagnosed PN? (It doesn't mean you don't have it if they haven't; but if they haven't even considered it, then you definitely haven't seen the "right" doctor(s) yet.) What medications are you taking? Do they seem to help?

If you have trouble seeking a doctor who specializes in PN, maybe you could find with a gynecologist who specializes in vulvodynia (vulvar pain). Much of vulvodynia is caused by pudendal neuralgia (although the general description of vulvar pain could describe those who have other causes of vulvar pain).

Stress, anxiety, fear all seem to make real pain worse. It sounds like your anxiety has skyrocketed and taken on a life of its own. Do you get any temporary relief from medications like diazepam, lorazepam, clonazepam?

For me, I am finding that the best way to deal with the PN and all the associated "issues" is by addressing all with equal importance. So, while I am definitely seeking out opinions from PN specialists and taking appropriate medications (for me, nortriptyline and a rare clonazepam), I also practice meditation to help me feel empowered in my own nervous system. After all, our central nervous systems are partially under our control -- it's my brain! (and your brain!) Our pain can be amplified and our minds hijacked by it, but our minds can also be soothed and calmed and our pain and other symptoms diminished and/or more easily carried.

There is a book that has helped me with this mind aspect of suffering. It's called Full Catastrophe Living, by Kabat-Zinn. Other things can help, too, warm baths or showers, healing affirmations ("I can feel this suffering. May it cease." "May I be healthy and well."), relaxation CDs -- whatever you can find that works for you.

I don't know if you've said this to any doctor yet, but I find it useful to acknowledge anxiety but clearly state there is also a real, physical problem that is feeding the anxiety. Make it clear to doctors that you are seeking help with both, but especially the physical problem. (Know that you can probably do more than any doctor for your own anxiety; it is within your control to affect, maybe first with help and guidance, but then you can do so on your own.)

Oh, and in answer to your questions:
does this sound like my central nervous system has been damaged? No, and even if it's in "overdrive" right now, it can be soothed.
what will happen to me if i dont get the help i need? I know it's so hard to get help, to make appointments, and wait, to be disappointed, and have to start all over with a new appointment, but you can get help. AND, you can learn to reduce your own anxiety and soothe yourself. No one can say what would happen if you don't get help -- it's possible that the symptoms would diminish and go away in spite of doing nothing! Who knows? But taking action (even if it's a decision not to take a specific action) is empowering.
will i ever be cured and lead a normal, happy life again? Yes, it's possible. You had pain in the past that went away, if I remember correctly. Even if your vulvar pain never goes away, you can be happy and feel life is worth living and cure so many of your other symptoms.

May your suffering cease, Candice Marie. And as Catherine said, you are not alone. So many of us understand.

[Lernica]

Well said, Susibee!

[susibee]

Candice Marie,

These are two links to websites about CRPS/RSD. Perhaps someone there can direct you to a pain management center that will be of help to you.

http://www.fightingrsd.com/index.htm
This one has a forum.

http://www.rsdalert.co.uk/index.html
This one has a list of members whom you can contact, apparently. Also an FAQ section.