Physical Rehabilitation for CRPS with Michael Sullivan - RSDSA

[@oliviaortiz5989]

We are already in sever pain, and we are being asked to endure even more through Physical therapy! How easy it's said, were thinking suicidal thoughts to get releave the pain, and he's talking about induring more🤕☠️😢😥😩😞 He's DELUTIONAL trick our brain REALLY 😲?

[@RSDSA]

Physical therapy has had positive results for some CRPS/RSD patients. What are you doing to find relief, even if temporarily, Olivia? How are you and how can we help?

[@Lexilea68]

Yes. I don't need more defeated messages.

[@nobody-rr5ln]

@@Lexilea68 i ve also crps in both hands and harms. It s unbearable torture pain 24/7. I try grounding 1 hour per day( search on ncbi grounding inflammatory..). I need to keep the faith because my life has been a fucking hell for 3 years AND NOBODY UNDERSTANDS IT! i can honnestly say that these tortures lead to suicide! It s extremelly difficult to spend 2x 30 minutes lying on the ground supposed to decrease the sympatetetic brain activity when the improvment is less than 0.1% per day!! Gosh.WTF! This is not human pain! It s totally barbaric. Waoww. I would like to be in touch with people who are in the deadly rabbit hole, a hole that nobody understand and believes you. Honestly a gunshot in my head would put an end to that! But i don t live in a country where i can buy it.i m not in texas! I become extremelly depressed and very angry to have to suffer this bullshit while i see bastard people suffering from nothing!!@ DISGUSTING.hell on hearth for us .worst : when nobody believe you waouuu 😱😱😱😱😱😱😱

[@gailblume7353]

I must have a different CRPS to the one this guy is talking about. This guy doesn't seem to get that the pain/spasms/burning/numbness/pins & needles/lack of control aren't something that can be pushed through. I am sick to death of these kind of practitioners (very prevalent and very confident) and wonder if they realise how much time they waste of a patients' brief window to get some easing and de-escalation of the progress of this disease. Especially when it is a work-related injury and they have the power behind the insurance companies when you are seeking help, understanding and the best strategies to live with the disease.

[@RSDSA]

thanks for sharing your thoughts. Gail, may we help? Best of health, Jim Broatch

[@Lexilea68]

That was kind of RSDSA to offer help. (Gail's pain and suffering). I'm suffering after fall, calf strain, and subsequently developed a DVT now on Eliquis. Blue, swollen, hot then cold, painful leg.

[@oliviaortiz5989]

Gosh, I was thinking the same thing 🤢 when we're in pain, real pain, nothing anyone has ever felt or experienced except for those with the crps, we would have to be dead to be able to turn it off like an alarm going off🤕🤕 if it were possible would anyone really live with the none stop missury, thier entire life?? I am sure he means we'll, but this is an out in space belive 🤢👽🤖!!

[@Lexilea68]

I agree. I feel responsible for my failure.

[@TimNimsLife]

Great presentation!!

[@Lexilea68]

There are EBP presentations here on YT advising that touching or stimulating and already overly stimulated nerve or area of an affected extremity when it is painful, is NOT helpful. The "No pain no gain" is not the approach to CRPS in regard to PT and rehabilitation. The moment a practioner suggests the sufferer has control to turn off nerve impulses, RUN! That's like telling a seizure patient to stop doing that. Sounds sadistic on an emotional and psychological level to make the patient responsible for his or her pain level. This speaker is NOT the authority on pain control. He is not a board certified anesthesiologist or a pain specialist who has done a fellowship in pain management to approach in an empathetic and compassionate manner. This may work for someone who doesn't have CRPS perhaps to make a mosquito bite stop throbbing but this material is rubbish and could quite possibly cause suicide. This video should be taken down. It causes the victim to feel defeated for being a failure to stop "seizures". This approach might be incorporated as an adjunct to the treatment plan as a modality, but to tell us we have the power to turn it off?! No insurance company would be paying for these expensive Ketamine, Ivg, lumbar sympathetic nerve blocks, spinal stimulation units, or Immunologist referrals, etc. If it were something the human being suffering could stop.

[@RSDSA]

I sent your comment to Dr. Sullivan for his response

[@Lexilea68]

@@RSDSA Appreciated.

[@humility1st]

@@Lexilea68 Ever hear anything back?

[@trl859]

I have wondered that exact thing. Why stimulate something that is overstimulated already? The only thing I can figure out is that maybe that negative feedback loop will finally kick in and stop the nerves from reacting. But who knows. I do think the heat needs to be controlled. I firmly think the heat in my feet causes damage. Not only do I feel damage in my feet (texture changes, bone pain) when I let the heat get out of control, but it just makes sense. When normal fever gets too high, we get damage in our brain. So of course, the feet (or wherever you pain is) are getting damaged. Again, it just makes logical sense. So control the pain, and thereby control the heat with whatever is needed. In my case, I am able to control it with Gabapentin and Methocarbamol. Obviously, everyone is different.

[@Lexilea68]

@@trl859 and oftentimes CRPS fizzles itself out. I am headed to remission but may always have residual burning, pain, and crippling but I am out of the wheelchair, off of the cane so I am blessed. May you too be touched by the Lord in healing. Amen