My daughter starts an intensive treatment out-patient program starting on Monday - wish us luck! We have hope. She's having her first serious flare up right now and her pain is constant, with intermittent zinging pains on top of that, and it is really rough. It's so hard to watch her suffer so much, and not be able to take the pain away.

Hi Buffy,

Healing thoughts and prayers are coming your way. I hope your daughter finds relief and improvement soon. I am so glad she got into an intensive program! Make sure she feels comfortable communicating her response to treatment. It is easy to overdo and sometimes we survivors push a little too hard as we try to get better. If she has difficulty she should tell her practitioners so they can adjust her treatment plan. Hopefully, she will sail right through.

Hang in there Mom. There is definitely hope and the very real potential for healing. We are all rooting for you and your cub.

Sending good thoughts and prayers your way that this program is successful for your daughter. I've heard good things about these programs especially for young people. Best of luck to your daughter and keep us posted!

buffeym.
I hope this program offers your daughter health and healing. Sometimes starting rehab can be rough at first (for mother and daughter), but the payoff can be worth it. If you need a place to vent come back and tell us all about it. Best wishes, mama mac

Hi Everyone,
I'm jumping in here, because I am new to this talk forum. It looked like a happy post, so happy for the new therapy for an rsd person.

I have rsd in my left hand, along with up to the back of my should and neck. It was triggered by falling and fracturing my #4, #5 knuckles about 17 monthes ago.

Question: I keep seeing people talk about cold rsd and hot rsd, where hot rsd tends to be acute and resolve itself more within a year. The cold rsd tends to become more chronic, and gives people trouble for quite awhile. I will ask my pain doctor next time I see him ... but, does anyone know how to describe how "cold rsd" works in general vs. the "hot rsd".

Nerve blocks help me greatly, and I sure wish I could get my nerves to calm down. Appreciate any advice or things you have heard.

Take Care.

Hi and Welcome Lornorl,

I am sorry you had to come join us but this is a great place for sharing and support. You might get a lost in this thread though. You could re-post with a new thread and the most members would see you and respond.

I too have struggled with the hot/cold CRPS idea. Mine seems to vacillate back and forth depending on ambient conditions.

As for calming your nerves, have they tried you on anything for that? Some people do well on gabapentin or the tricyclic antidepressants such as nortriptyline. Some of the compounded creams or OTC lidocaine can be helpful too. At Stanford they do peripheral nerve blocks with botox to the localized area of pain. There are lots of options.

Come tell us how you are doing. I hope you find relief soon.


Thanks Buffy for sharing your thread for the Welcome! Sorry about that...

Hi back to the mom and to Buffy,
Say, so sorry to not know what I'm doing. I'm 54 and I have never posted in a forum or a chat... Ever. It's amazing I found my way back.

Tommorow, I will figure how to start a new topic...
I'm a mom, so I wanted to encourage the mom with the child with RSD that children respond wonderfully to good treatment, and I believe the majority put it into remission. Intensive is good. I'm understand the pain, moms feel seeing their kids hurt ... We would take it for them if we could. I said a prayer for you and your child tonight.

I was in pain when I posted, earlier, so I could read clearly. It was happy for treatment and sad for suffering. Hang in their, the suffering eases.

I also figured out... Boy did I pick a silly name, lornorl... Great.

Oh well. I triggered a flare, that zinged my left hand and hit my brain, hard. I took the trash to the end of the driveway and didn't wear gloves in 25 degree weather. My left hand totally hurt bad. Like I froze it off. The good news is my right hand was fine, I was almost happy because I have been worried about my right hand. My right fatiques, but I don't think that's the RSD. It's in my left. So, i put a heating pad on my left, and slept for 3 hours...

Buffee: Yes I'm on that neuron tin/gabepentin. My pain is under control mostly. I had pretty aggressive early treatment, had some approval delays for blocks. But, I have good care. I have trouble describing what I feel. I am guessing that cold RSD feels, I mean the pain we feel, like you put your hand in ice and pulled it out. Even if you skin feels warm, your nor really burning pain... More ache and it's a bad ache. When the pain came for me, it was a ache... I didn't relate so much to my hand was on fire. It just was a deep ache and I couldn't move my fingers and hand that we're casted.

I'm trying to learn as much as I can, so I can match up to the best treatment. I had very good pt for one year, hands better but it's not like before the fracture. My skin is whiter and has a slight shine. Nails break. Orthopedic and pain Doctor confirmed RSD. Blocks at 8 mos, dropped pain by 75 percent. I get partial relief, and it comes back up after a few months past a block.

If cold RSD is more achy frozen pain. That hot RSD which is more burning pain... I just wanted to know if that's it. Or is it you limb temperature.

I'm typing on my phone, cannot proof. Thanks for saying hi.

God Bless... Lornorl. I wanted to be grandma4, 4th grand baby due in 3 weeks!!

Lornorl, please don't feel bad about posting here! It is very common for newcomers to show up in an existing thread. Happens all the time. You are doing great. I know Buffy understands, I just wanted to acknowledge her thread and let you know to start a new one so you don't get lost. You can do that by simply hitting the New Thread button at the top of the CRPS forum. New members threads have to be approved so it may take a little while to show up.

I'm glad you got early treatment and meds. That improves your outcome for sure.

Thanks again to Buffy!

I'll post this here despite the fact this wasn't the original subject matter of the post in case the person who asked has trouble navigating the forum.

The difference between 'hot' and 'cold' CRPS is more than just how warm or cold your limb feels. I've posted the abstract from a clinical paper which explains the basic principles because its simple and easy to understand. I'd caution that its an old paper - things have moved on a lot since 2009 and the TREND consortium headed from the Netherlands has done quite a lot of investigation of the hypothesis that CRPS has quite distinct phenotypes which may even turn out to be entirely different conditions.

Warm and Cold Complex Regional Pain Syndrome

Robert J. Schwartzman, MD reviewing Eberle T et al. Neurology 2009 Feb 10.

Clinical differences between warm and cold CRPS suggest involvement of distinct pathophysiologic mechanisms.

After limb trauma, patients sometimes develop complex regional pain syndromes (CRPS), but symptoms are highly diverse, including either elevated or depressed skin temperature. To understand clinical differences between “warm” and “cold” CRPS, researchers recruited 25 patients with each syndrome; the two groups had no significant differences in age, sex, affected limb, duration, and proportions with and without peripheral-nerve lesions. The investigators obtained medical histories and neurologic evaluations for all patients and used quantitative sensory testing to evaluate large- and small-fiber function.

More patients with cold CRPS than with warm CRPS had histories of chronic pain disorders and serious life events preceding the illness. They experienced cold-induced pain, paradoxical heat sensations, and loss of nonpainful sensitivity (often bilaterally). Patients with warm CRPS more often demonstrated signs of inflammation, including neurogenic edema, hyperthermia, and erythema. Patients with warm CRPS often had mechanical hyperalgesia, whereas dystonia was present only in those with cold CRPS. The authors conclude that warm CRPS might represent cytokine-induced exaggeration of traumatic inflammation, whereas cold CRPS might result from a centralized change at the spinal cord or brain level.

- See more at: http://www.jwatch.org/jn200903240000....FnCKJeGm.dpuf

Lornorl - no worries. Welcome to this forum. I've found it to be one of the best online for supportive and helpful folks.