Cold type regional pain. Please help
 

I have crps in my vulva/clitoris. It is horrific and a nightmare. I am only 18. I had all the swelling and burning and issues for about a year up until 2 months ago. Swelling reduced, pain reduced, I could sit more. I was very excited until it was replaced by an EXTREME cold pain. I know that means my circulation is awful and it's mostly in my clitoris right noway and I am very scared. Has anyone had success treating the cold type of crps. I really need to hear some success stories or some treatment options. So far I have heard very little in success for treating the cold symptoms. This is by far the worst feeling. I don't want a numb vagina. Someone please help.

You need to see a doctor who knows about CRPS to treat this.

My success with cold CRPS comes from Low Dose Naltrexone and warm water Aqua PT. I spent the entire summer last year huddled under an electric blanket, this year there were only a few summer days that I needed to turn it on. :hug:

Hello and Welcome Tata,

I am so sorry for what you're going through. That sounds miserable. Sometimes drugs like clonidine or terazosin are used to improve circulation. They can be taken orally or some meds can be compounded into topical creams by a special pharmacy to treat a limited area.

I have been receiving ketamine infusions for a year plus now and have gained warmth and function in my affected foot. It is still colder than the other but not as bad. There is hope and treatments that can help. Everyone is different so it takes some trial and error to find what works for you. For the record, I have had substantial improvement over the last year. I am not completely pain free and have to be careful, but I am much better and am able to walk and do what I need to each day. I was on crutches and a scooter for about a year.

Did your doctors check out all the possibilities for you having something they can treat? It seems sometimes people land here without having had adequate rule out. Nobody should settle for chronic pain if they don't absolutely have to. It can be difficult to stand up to doctors at any age and can take quite a bit of push at times to get needed tests or second opinions. My concern would be that your youth could affect doctors interactions (who already feel they know best but are sometimes wrong ;)). I hope that you feel comfortable with the answers your doctors have given you. If you don't, it is worth getting more information, referrals or taking along a trusted advocate. Another pair of eyes and ears in the room can be helpful for several reasons. Please don't take any offense here. I am a Mom to a teen first and foremost and we Moms never do shut down.

I hope you find relief soon. I am sending healing thoughts and many wishes for recovery, :hug:

I have *never* heard of CRPS occurring in that region. What does your doctor say?

I have been looking into naltrexone for a while now. I can't really seem to find how to get it. I'm assuming you need a prescription but I've also seen it online. I really need it. I'm freezing and red right now. Used to be swollen. Now it just is so cold. Also how long did it take to work? Thank you!

My doctor diagnosed me just today after I've had months if suspicion. It follows the exact same path that regular crps does. First swelling and burning then it led to a coldness that I just can't seem to shake. I'm not sort of going inbetween the two. Pain with touch. I've looked all over for other answers and this seems to sadly be what I have.

If you google LDN and Dudley you will find the info you need to get LDN, either via a doctor's prescription or through mail order/or both.

Episode 39: LDN with Dr. Thomas Cowan | Phoenix Helix

Get Your Low Dose Naltrexone Prescription Online | LDN Doctor (I know nothing about this site. My opinion is that the out of pocket cost of consultation of 210 is not exorbitant, but it is an unfair price to pay if you are paying high premiums for medical insurance or have a WC CRPS injury that should cover this cost.)

LDN started to help me with my mobility (I progressed to walking more easily on crutches/walking upstairs) fairly quickly, within a month, but it took considerably more time to address the bone chilling cold. The biggest eureka occurred when I got into a warm swimming pool near the end of the summer last year. The water's buoyancy allowed me to walk, run, hop-abilities I did not have out of the water. As I became more mobile I experienced less full body cold. At the same time I started to gradually lower the temperature of my bath/shower water.

For full disclosure, I experienced several regressions, after an endoscopy/colonoscopy, after a slightly too long car ride, after trying to use a community pool and when the weather turned cold. I believe if I had started Aqua PT in a warm pool last fall and continued through the winter I would not have experienced these regressions. I know this, because once I started Aqua PT in May this year I started to improve dramatically.

It is my belief that LDN will help your body to heal, but at the same time you must address the changes that CRPS has made to your brain, through exercise and meditation. Dr. Michael Moskowitz Home | Neuroplastix explains in his book on brain healing, that chronic pain signals come from multiple areas of the brain that have been hijacked. In a nutshell you have to retrain your brain to eliminate those pain signals in those hijacked areas. Therapeutic Animations | Neuroplastix I found exercising in warm, salt water hypnotic-a two for one experience.

You have already received good advice and helpful links. Everyone is different in their response to treatments for CRPS. I have received relief from the cold type of CRPS with ketamine infusions. I was on LDN but only briefly because of side effects. I just happen to be sensitive to many drugs. The dose I received was prepared by a compounding pharmacy and was expensive even with decent prescription insurance. It must be prescribed and I would not use an online service unless your doctor approves it. There are some disreputable sites out there.

You also need to make sure that you are dealing with doctors who are experienced with CRPS. Ask your doctor for a list of the best hospitals, universities, and experts in this field. A reputable doctor will not take offense and should have that information available. I was fortunate to have a doctor who referred me for the help I needed and all the doctors that I have to deal with are willing to share information and advice.

Sending good thoughts and prayers for successful treatment.

I am still wondering about the prevalence of such a case and what the doctor(s) say(s) about this.

OP?

Nevermind, you answered my question above! Thanks! :D