Hi, Abbie:

How can a person know if her full body RSD is external or internal or both? This is something I have been wondering about. I know I have full body RSD, but how can I tell if it is external or internal or both? I think my RSD might have gone partly internal because I have thyroid and gastro-intestinal tract problems, besides the feelings of icy cold and insects running through my blood vessels.

I have also had PTSD since the day I was struck and injured by a car.

About the electrical discharges going up my spinal cord all the way to my brain (my head then bobs up and down), I have a document from an RSD association that says this is how RSD starts to spread in some cases. Of course, some medications I take could also play a role in this, but like you, I am too afraid to stop them one by one to find out if one of them is responsible for this feeling.

Quote: "Feelings of icy cold (like liquid nitrogen) running through my veins and arteries, making me shake real bad and giving me cold hands. This is the feeling of all of my veins. 24/7. Cold air makes it worse." The same thing happens with me. I particularly hate air conditioning.

Quote: "Feelings of insects crawling through my veins and arteries (creepy crawlies) in the torso area. I have this feeling frequently in my arms and legs." I really thought this feeling was so strange I had to be the only one to have it. Now I know it is not the case anymore.

Quote: "But sweetie... you have a beautiful baby boy that has the desire for you to live." This is true, but I have so much trouble thinking of myself as a good mother. I feel my baby deserves a much better mother than me.

Quote: "He's so young...he won't remember this bad time your going through...." What if this bad time lasts a very, very long time? Will he not see it and suffer from it?

Quote: "I do not enjoy the activities I used to enjoy (sky diving, water skiing, horseback riding, rock climbing, reading, etc.) Is it because you can't do these things anymore?" I guess my depression is responsible for this, because I can do these activities if I want to. It is just that I do not want to. Why? I would like to know.

Quote: "Print out information about RSD and take it with you to your psychiatrist and other doctors so they can understand that RSD is not a mental health problem but it does cause mental health problems." This is okay with doctors who believe I have RSD, but what about those who say my RSD is in my mind, the same way they say my pain is in my mind?

I thank you for your information, kindness, understanding, and compassion.

Hi, Free Kittens:

Thanks for sharing your experience with CPS. It helps me understand how the system works. It is wonderful you got your child back so she has a happy life with you.

Quote: "They will do it with police back up. However, in the US if you never let them in your house and they have no access to your child, such as when the child visits the other parent or goes to school (yes they interview your kid at school without your knowledge or consent) they can't come up with a case against you. If they show up at the door, slam the door and call your lawyer."

So I can refuse to let cops and CPS in my house? My baby does not go to school. I homeschool him. I have a infant-prescool teacher degree.

Quote: "When I worked as a social worker, I assessed thousands of suicidal mothers and fathers. Never did I think that their kids were at risk. Never did I call CPS. Nor did any of my colleagues. Shrinks and all docs HATE calling CPS and unlikely to call you in because you are suicidal."

When CPS called me once to try to get my real address (the hospital and medical centers I go to do not have my real address), I refused to give it to them. They could not trace the call because I was using a cell phone. I later realized it was a physical therapist that called CPS as a retaliatory measure against me because I was complaining about physical therapy being totally ineffective for my knee and RSD problems. She must have taken it personally. She knew (and she was the only one to know) that I had fallen several times with my baby in my arms because the U.S. orthopedic surgeons refused to reconstruct the ACL (Anterior Cruciate Ligament) in my left knee. As a result, my knee would give out and I would fall with my baby in my arms.

Once, it happened when I was in downtown SF. Someone called an ambulance. I quickly left with the BART train before the paramedics could have the time to arrive and steal my baby. I have to add that my baby was not injured during the fall.

Thanks again, Free Kittens, for your information. It is reassuring and helpful.

Hi kittycapucine,

I take an antidepressant and have for well over a decade... and always will take them. It took a long time to find the one that worked for me - a long difficult path of roller coasters.

When an anti-depressant works it gives one back the rationality required to deal with overwhelming stress/pain/death/this list goes on and on....

You are correct in saying the anti-depressant will not erase the problems - however, you miss the point that it will calm you - take away the anxiety - so that you can work on the problems.

Therapy also goes hand in hand with anti-depressants (you probably know this).

I know it takes a lot of courage and strength to write as much as you have here... well done! what a huge step you have taken.....

Addy

Wow!! It also works on anger and fear that borders on panic. My dr. calls it "a calming pill".....I call it a miracle!

Coffee Kitty, when you said you have thyroid problems something clicked. When my thyroid is low I get icy cold too. Is it possible an endocrinologist can alleviate this? Also, for the shockies, have you had calcium and vitamin D checked? That could account for that. I get the shockies and the icy cold when my thyroid and calcium are too low. I have also read that you can have normal thyroid levels in your blood, but still be deficient at the cellular level (although somewhat rare). Careful tho, too much Thyroid and you get insomnia. Hugs and light to you.

Hi, Addy:

While you were going through the long and difficult path of roller coasters, trying to find an anti-depressant that would work for you, how did you deal with your depression? Did you have some kind of emotional support from family, friends... ?

I wish I would find an effective anti-depressant now, even though the anti-depressants I tried in the past never worked for me.

Quote: "Therapy also goes hand in hand with anti-depressants (you probably know this)." You are right, therapy does go hand in hand with anti-depressants. I noticed the psychiatrists I met do not like to talk (therapy); they only want to prescribe anti-depressants. On the contrary, psychologists seem to be more into talking than psychiatrists. Unfortunately, psychologists consultations are not reimbursed by the public health insurance company in French Polynesia, so I cannot afford them with the small salary I earn.

Thanks, Addy, for your kind words and your information.

Hi, tied:

Quote: "When my thyroid is low I get icy cold too." Do you know what kind of blood tests can tell if my thyroid is low (or high)?

Maybe my full body RSD is internal as well as external. I wonder if thyroid problems can cause suicidal thoughts and depression, despair, sadness...

Quote: "For the shockies, have you had calcium and vitamin D checked? That could account for that." I asked my primary care physician to prescribe some blood tests for me, but I do not know if he included calcium and vitamin D levels.

Quote: "I get the shockies and the icy cold when my thyroid and calcium are too low." Are you saying that electrical discharges (shockies) could be linked to low calcium and vitamin D levels? The low levels of calcium and vitamin D could be caused by my full body RSD.

Quote: "I have also read that you can have normal thyroid levels in your blood, but still be deficient at the cellular level (although somewhat rare)." Do you remember if you read that on the Internet? if yes and if you remember the link to this document, you could post this link here or send it to me through a Private Message. It is up to you.

Quote: "Careful tho, too much Thyroid and you get insomnia." It is really strange. I do have insomnia. If I can fall asleep at night, it is because of all the medications I take before going to bed. However, if I wake up during the night (this happens often), I have a lot of trouble falling asleep again. I can stay awake for hours, even with my eyes closed.

What I meant when I mentioned the strangeness of this situation is that my icy cold feeling could be caused by low thyroid and my insomnia by high thyroid. How can a person's thyroid levels fluctuate between low and high levels in the same day, without a valid reason for that?

I thank you for your information and for your kind words. All of you here are showing a lot of kindness, caring, and understanding.

>Do you know what kind of blood tests can tell if my thyroid is low (or high)?

They can test for TSH, T4, and T3, usually you need an endocrinologist for this.

>I wonder if thyroid problems can cause suicidal thoughts and depression, despair, sadness...

Yes

>I asked my primary care physician to prescribe some blood tests for me, but I do not know if he included calcium and vitamin D levels.

It is quite common to be deficient in Vitamin D and it can also cause depression. You are probably B12 deficient too from the stress of the RSD and the prescriptions both.

>The low levels of calcium and vitamin D could be caused by my full body RSD.

Could be, although not enough sun is what usually causes vitamin D deficiency.

>"I have also read that you can have normal thyroid levels in your blood, but still be deficient at the cellular level (although somewhat rare)." Do you remember if you read that on the Internet?

Not a complete list but still looking.
http://www.youtube.com/watch?v=RdON5RMiDDo
http://en.wikipedia.org/wiki/Hypothyroidism

>How can a person's thyroid levels fluctuate between low and high levels in the same day, without a valid reason for that?

They probably don't, but you can get some of the same symptoms for both hyper and hypo.

Hi kitty... I'm sorry its taken me a few weeks to reply to you... been going through some depression lows again ... wiggling my way out of it again...

and when that happens, I digress and procrastinate and come to quite a standstill ...

it takes a lot of my energy to deal with certain things... and when I'm down... I find it exhausting to "talk" about myself...

probably because I'm sorting through some things ...

Anyway... here I am, finally....

Yes, I've had friend and family support - but not always ... I accept there are people who just don't "get it"... I've learned that's ok... I've learned not to burn too much of my positive energy on trying to help "teach" those who aren't ready for it...

I've been coming to the internet since the early 1990's!!! and have friends here like Alffe and Lara and so many more!!!! that I have known from that time...

Its taken me a long time to get where I am today... and I'm pretty knowledgeable about myself... but I slip and fall all the time.... I climb one step... go back 2 then forward 4!!! ... you know all the lines...

thanks be to this place!!!

Its not easy being a human

kittycapucine - use the internet as your therapy - you've found a good place... take baby steps .... be easy on yourself... relieve as much stress from your life as possible and within reason...

We're here for you, truly!

Addy

Some of you are talking about thyroid problems. I have 8 nodes, and supposedly my blood work is fine and so are the biopsys. However I cannot control my body temp. I go from extreme heat, to being chilled and have to get in bed. Does this happen with thyroid problems?. My doctor has not been able to find out why I am doing this. It is a hot flash that lasts a long time and you "feel sick". I am tired of going round and round with this physician about these symptoms. Does anyone know? ginnie