I was crippled by CRPS in one leg for 25 years. I was homebound and used a wheelchair. I took lots of meds and was still in pain. I couldn’t wear socks, shoes, or clothing on that leg. I was living a life of despair getting worse by the month. Then I met one of the few chronic pain focused peripheral nerve surgeons in the U.S. Dr. Tim Tollestrup in Las Vegas. He disconnected the damaged nerve that was causing my symptoms. I walked the next day painfree. Other symptoms such as discoloration and swelling resolved over several months. I now take no meds and live a normal life. If you have CRPS you should seek his help.
The nerve block was for diagnosis only. After locating the source of the pain by blocking it for two days, the nerve was disconnected which eliminated the pain completely. It has been years and the knee is pain free and other symptoms e.g. discoloration are absent as well.
A wealth of information! Thanks so much for caring enough about your patients to keep probing for answers. Also thank you for your great sense of humor!
I have widespread I don't Think anyone I know could go thru what I go thru. I've always had a high pain tolerance but when it effects the whole body or my whole nervous system crashes. My pain can cause pain induced seizures, lights, temperature, and noise can cause my pain to get worse, even just my hubby talking slight to loud toasts my ear, is like I have to plug my ears off feels like a full on attack to my body. But especially stress, any kind of stress, even eating to fast can catse a huge flair where I have to go under a blanket in the dark. When I awake I'm Sooo Stiff, it takes everything I have to even open my hand, turn, or stretch, but I have to move all my body, and stretch in order to reduce my pain. I got this directly after a spinal cord and brain injury. It started in my calves oddly and I kept telling Drs but they sayd, it's 99% not immflamation induced, within 6 months it was widespread and had a full crash retirning a netflix movie on Christmas eve. Even though it feels like really bad inflammation. Like shutting your finger in the door and the pulsing right after, that's the whole body but it never goes away, the bone is even effected as if a really bad flu. Even on pain meds it feels like ice cube pushed into the skin and you can't remove it. When I'm bad even a fan can cause severe pain to all my body. When my husband gets into bed and moves the sheets, it's enough to make me sobb, if he puts his hands on my thighs to show affection, it's everything I got to not push his hand away, I just hold his hand still, so he don't keep moving it. I try so hard to keep quite about my pain. But it's so hard. I'm on palliative care, after the second TBI it made my crps WAY worse. I am on opiates and belbuca 700 mcg 2xs a 24 hr and 15 mg every 4 hrs of oxy. We're still trying to find a proper dose where my nervous system is not in distress. I feel the oxy helps more then anything else, I've tried over 45 medications to help this. I have now multi organ dysfunction due to the last head injury, that has given me mylti autoimmune dieases, and also have hyper EDS. As well as major inflamed muscle trigger points throughout my body and stage 4 adrenal fatigue. My cortisol is higher then anyone my Dr has ever seen, but it's cause I'm in SO MUCH pain all day and night. Nights are worse cause you can't use distraction to help. If I could have this in only 1 limb would be so much easier. Any ideas to help me better is much appreciated. I just want to be not be bed bound. I NEED to move, I can't lose anymore muscle mass. Moving to dryer climate has helped some. Summers are better, too. So somehow the sun helps.
Ketamine helps with CRPS and depression. A double win from what I have researched. I personally cannot wait until it is FDA approved to try it myself, if my insurance will cover the expense. Also want to add Dr. Chopra seems to be one of the most informed doctors in the area of CRPS pain reduction and/or regression. Thanks Doc!
It is used in the us... There are clinics that even use then for nerve blocks for various nerve problems. The doctor who wrote an article called "The stupid epidemic" has some clinics in Illinois area.
I have found ketamine to be very helpful moving forward with CRPS. The pain is still there, the burning has lessened but my headspace has shifted giving me a more hopeful attitude to do what I can.
HELP. OH wow.. I developed CRPS -inability to walk, would throw up pain severe-- Autoimmune ... Now with CRPS-- I see what yI just found out my back is broke-- I been in a lot of pain.. But no reason why my back would be broken--other than CRPS caused the bone changes = Loss.. Pain Dr says just pain nothing we can do.. USA here.. Thank You..
I’m not diagnosed with CPRS, but I have chronic pain in 3 locations. Im using TSO it’s a whip worm ova propagated in pigs . Sounds wild but it actually works . You take it every 2 weeks , I’m due for my next dose and my arm is killing me . Once taken the Pain resolves in 24hrs . If your pain is immune driven this is very effective .
You can do HBOT in Pocatello Idaho, mom hospital, $125 per sessions You can do sessions a day, they have a live on site opportunity while you do your treatments.
I have this beast in my left groin, across my swollen abdomen and into my prickly burning spine. Have you encountered others like me? Please reach out to me.
Autoimmune connection with CRPD? When CPRD overlaps with RA? My internist GP doc just DX me with CPRD following a long history of bizarre neurologic pain, twitches, and allodynia and recent post hammertoe surgery neuro pain complications. She is recommending PT for CRPS and controlling what she perceives as the root to the problem, the RA, with getting back on my current RA med ASAP. I take Orencia after Enbrel finally failed, but have to hold back before and during surgeries due to infection risk as these meds are very powerful immunosuppressants. I find it hard to believe I am only person with RA and CRPS? What do we know about the autoimmune connection with CPRS and biologic meds? Has anyone tried the powerful Biologic drugs like enbrel, Orencia and many more for CPRS? Enbrel messes with the TNF inflammatory pathways and Orencia dampens T cell activity which can become over reactive in AI disease like RA. Inquiring minds and and painful would like to understand what is happening and have these meds been used before for CRPD. Never give up with finding joy in your life and be grateful for what you are able to do and family and friends who care.
We asked Dr. Andreas Goebel, an expert on the immune system contributions to CRPS and here is his reply: There are no studies indicating a specific link between RA and CRPS that I am aware of, but there are several small studies suggesting a possible autoimmune component to CRPS. There is also increasing evidence from multiple sources that immune factors can influence CRPS. In terms of treatment of chronic CRPS using immune modulating therapies, the research on this is mixed and incomplete: 1) Anecdotal evidence exists for the efficacy of high-dose intravenous immunoglobulin therapy (IVIG) 2) Preliminary evidence from a small randomized trial indicates that infliximab may not be effective. 3) Preliminary evidence from a small 2-centre case cohort study indicates that high dose oral steroids are rarely effective, and evidence from one small randomized trial suggests that intrathecal steroids are not effective. 4) Good evidence indicates that low-dose IvIG (0.5g/kg) or Lenalidomide are not effective. 5) Preliminary evidence from a small study indicates that mycophenolate may be effective. 6) A recent laboratory study suggests that anakinra could be effective in CRPS but there is no clinical study. 7) Evidence from 40 patients indicates that plasma exchange may be effective in a substantial proportion of patients, but long exchange cycles and usually also repeats will be required. Sorry for the lack of definitive answers, but it is not impossible that autoimmune therapies might have some benefit in CRPS. We just don’t know for sure.
Look up helminths they regulate TH1&2. there must be a link between RA and CRPS... both conditions have elevated cytokines levels . If u have RA (autoimmune disorder) your pain is possibly autoimmune driven causing CRPS
ive had the ketemin it only worked short term my dr has me on cymbalta but refuses to give me anything to help with the pain nothing she has me on is working
They are good until you can get to something better. I was told nothing would be better until you can find something right. Well, its easy to say that when you know it does more th2an nothing and nothing is unbearable and crippling. Help can be a long wait and a lot of appointments and travel and you have to function and be present. Physical therapists will not be able to work with you if your pain is not stable and you need to be able to communicate, listen, remember, and focus. The more pain the harder that is.
Actualy I am taking tab lyrics, tab cymbalta, tab Vit C ,D, B, Calcium .I have no relief, then I go through 6 katamin infusions .Seven days I have zero pain.From eighth day sever pain starts 4-5 times in a day with duration of 10 minutes .now please tell what I have to do and how I have to leave.
It's very hard to describe unstoppable pain from my feet to my hair that no body belive unstoppable with telidin with Cymbalta with oxicodone and with more than 80medications dieng in germany and nobody help😢😢😢😢😢😢😢😢😢😢😢
日本だとCRPS患者の痛みは“頭がおかしい”と言われて精神科行きになります。 麻酔科医だけが信じてくれる。 日本では… It's difficult trying to express the pain level to those who do not understand and haven't experienced.
I have to make anticoagulation treatment, and here they want me to take Sintron, meaning blood analysis every month. They dont believe we shouldnt abuse of needles
I was crippled by CRPS in one leg for 25 years. I was homebound and used a wheelchair. I took lots of meds and was still in pain. I couldn’t wear socks, shoes, or clothing on that leg. I was living a life of despair getting worse by the month. Then I met one of the few chronic pain focused peripheral nerve surgeons in the U.S. Dr. Tim Tollestrup in Las Vegas. He disconnected the damaged nerve that was causing my symptoms. I walked the next day painfree. Other symptoms such as discoloration and swelling resolved over several months. I now take no meds and live a normal life. If you have CRPS you should seek his help.
with what test did he locate the damaged nerve?
It was a block of the saphenous nerve guided by ultrasound. It stopped the pain immediately and for about two days.
I’m a bit late to the convo ! Did your pain stop only for 2 days (your last comment ) or do u still have it ?
The nerve block was for diagnosis only. After locating the source of the pain by blocking it for two days, the nerve was disconnected which eliminated the pain completely. It has been years and the knee is pain free and other symptoms e.g. discoloration are absent as well.
Wouldn’t your case be considered CRPS type 2?
A wealth of information! Thanks so much for caring enough about your patients to keep probing for answers. Also thank you for your great sense of humor!
great day & opportunity to increase awareness of CRPS
We're always here for you and other Warriors, Cathy!
November is CRPS Awareness Month!!!! The first Monday of every Monday is Color the World Orange!!!
Wonderful Thankyou for all the information in managing this unfortunate condition.
I have widespread I don't
Think anyone I know could go thru what I go thru.
I've always had a high pain tolerance but when it effects the whole body or my whole nervous system crashes.
My pain can cause pain induced seizures, lights, temperature, and noise can cause my pain to get worse, even just my hubby talking slight to loud toasts my ear, is like I have to plug my ears off feels like a full on attack to my body. But especially stress, any kind of stress, even eating to fast can catse a huge flair where I have to go under a blanket in the dark. When I awake I'm Sooo Stiff, it takes everything I have to even open my hand, turn, or stretch, but I have to move all my body, and stretch in order to reduce my pain.
I got this directly after a spinal cord and brain injury.
It started in my calves oddly and I kept telling Drs but they sayd, it's 99% not immflamation induced, within 6 months it was widespread and had a full crash retirning a netflix movie on Christmas eve.
Even though it feels like really bad inflammation. Like shutting your finger in the door and the pulsing right after, that's the whole body but it never goes away, the bone is even effected as if a really bad flu.
Even on pain meds it feels like ice cube pushed into the skin and you can't remove it.
When I'm bad even a fan can cause severe pain to all my body.
When my husband gets into bed and moves the sheets, it's enough to make me sobb, if he puts his hands on my thighs to show affection, it's everything I got to not push his hand away, I just hold his hand still, so he don't keep moving it.
I try so hard to keep quite about my pain. But it's so hard.
I'm on palliative care, after the second TBI it made my crps WAY worse.
I am on opiates and belbuca 700 mcg 2xs a 24 hr and 15 mg every 4 hrs of oxy. We're still trying to find a proper dose where my nervous system is not in distress. I feel the oxy helps more then anything else, I've tried over 45 medications to help this.
I have now multi organ dysfunction due to the last head injury, that has given me mylti autoimmune dieases, and also have hyper EDS.
As well as major inflamed muscle trigger points throughout my body and stage 4 adrenal fatigue.
My cortisol is higher then anyone my Dr has ever seen, but it's cause I'm in SO MUCH pain all day and night. Nights are worse cause you can't use distraction to help.
If I could have this in only 1 limb would be so much easier.
Any ideas to help me better is much appreciated. I just want to be not be bed bound. I NEED to move, I can't lose anymore muscle mass.
Moving to dryer climate has helped some. Summers are better, too. So somehow the sun helps.
Ketamine helps with CRPS and depression. A double win from what I have researched. I personally cannot wait until it is FDA approved to try it myself, if my insurance will cover the expense. Also want to add Dr. Chopra seems to be one of the most informed doctors in the area of CRPS pain reduction and/or regression. Thanks Doc!
It is used in the us... There are clinics that even use then for nerve blocks for various nerve problems. The doctor who wrote an article called "The stupid epidemic" has some clinics in Illinois area.
The Chopra family is brilliant. Deepak, his brother (name escapes me, sorry Multiple TBI here).
I have found ketamine to be very helpful moving forward with CRPS. The pain is still there, the burning has lessened but my headspace has shifted giving me a more hopeful attitude to do what I can.
HELP. OH wow.. I developed CRPS -inability to walk, would throw up pain severe-- Autoimmune ... Now with CRPS-- I see what yI just found out my back is broke-- I been in a lot of pain.. But no reason why my back would be broken--other than CRPS caused the bone changes = Loss.. Pain Dr says just pain nothing we can do.. USA here.. Thank You..
I’m not diagnosed with CPRS, but I have chronic pain in 3 locations. Im using TSO it’s a whip worm ova propagated in pigs . Sounds wild but it actually works . You take it every 2 weeks , I’m due for my next dose and my arm is killing me . Once taken the Pain resolves in 24hrs . If your pain is immune driven this is very effective .
I have never heard of this but I’m going to check into it!
Did not know this is a thing until today!
Now I see my limb preservation specialist to discuss further.
May we help you? We can email info if you email us at info@rsds.org
very informative.. thank you
Does anyone else experience hair thick lightening bolts when wearing clothes made of static prone fabrics?
😢😢😢😢😢yesssssss me allllllll and nobody believe
TY
I've been told I was lying about my pain and ill feel you it really messed with my mind and gave me depression.
You can do HBOT in Pocatello Idaho, mom hospital, $125 per sessions You can do sessions a day, they have a live on site opportunity while you do your treatments.
I have this beast in my left groin, across my swollen abdomen and into my prickly burning spine. Have you encountered others like me? Please reach out to me.
Autoimmune connection with CRPD? When CPRD overlaps with RA? My internist GP doc just DX me with CPRD following a long history of bizarre neurologic pain, twitches, and allodynia and recent post hammertoe surgery neuro pain complications. She is recommending PT for CRPS and controlling what she perceives as the root to the problem, the RA, with getting back on my current RA med ASAP. I take Orencia after Enbrel finally failed, but have to hold back before and during surgeries due to infection risk as these meds are very powerful immunosuppressants. I find it hard to believe I am only person with RA and CRPS? What do we know about the autoimmune connection with CPRS and biologic meds? Has anyone tried the powerful Biologic drugs like enbrel, Orencia and many more for CPRS? Enbrel messes with the TNF inflammatory pathways and Orencia dampens T cell activity which can become over reactive in AI disease like RA. Inquiring minds and and painful would like to understand what is happening and have these meds been used before for CRPD. Never give up with finding joy in your life and be grateful for what you are able to do and family and friends who care.
We asked Dr. Andreas Goebel, an expert on the immune system contributions to CRPS and here is his reply: There are no studies indicating a specific link between RA and CRPS that I am aware of, but there are several small studies suggesting a possible autoimmune component to CRPS. There is also increasing evidence from multiple sources that immune factors can influence CRPS. In terms of treatment of chronic CRPS using immune modulating therapies, the research on this is mixed and incomplete:
1) Anecdotal evidence exists for the efficacy of high-dose intravenous immunoglobulin therapy (IVIG)
2) Preliminary evidence from a small randomized trial indicates that infliximab may not be effective.
3) Preliminary evidence from a small 2-centre case cohort study indicates that high dose oral steroids are rarely effective, and evidence from one small randomized trial suggests that intrathecal steroids are not effective.
4) Good evidence indicates that low-dose IvIG (0.5g/kg) or Lenalidomide are not effective.
5) Preliminary evidence from a small study indicates that mycophenolate may be effective.
6) A recent laboratory study suggests that anakinra could be effective in CRPS but there is no clinical study.
7) Evidence from 40 patients indicates that plasma exchange may be effective in a substantial proportion of patients, but long exchange cycles and usually also repeats will be required.
Sorry for the lack of definitive answers, but it is not impossible that autoimmune therapies might have some benefit in CRPS. We just don’t know for sure.
Look up helminths they regulate TH1&2. there must be a link between RA and CRPS... both conditions have elevated cytokines levels . If u have RA (autoimmune disorder) your pain is possibly autoimmune driven causing CRPS
Opiods are a good idea I find Oxycodone is best orally. Ketamine?? I am not a Horse ! Amitriptyline and Baclofen help a bit too. Swimming is good too.
ive had the ketemin it only worked short term my dr has me on cymbalta but refuses to give me anything to help with the pain nothing she has me on is working
They are good until you can get to something better. I was told nothing would be better until you can find something right. Well, its easy to say that when you know it does more th2an nothing and nothing is unbearable and crippling. Help can be a long wait and a lot of appointments and travel and you have to function and be present. Physical therapists will not be able to work with you if your pain is not stable and you need to be able to communicate, listen, remember, and focus. The more pain the harder that is.
Please share the medications ,if some one get relief of that, and also tell how you people manage when pain flares up.
Actualy I am taking tab lyrics, tab cymbalta, tab Vit C ,D, B, Calcium .I have no relief, then I go through 6 katamin infusions .Seven days I have zero pain.From eighth day sever pain starts 4-5 times in a day with duration of 10 minutes .now please tell what I have to do and how I have to leave.
It's very hard to describe unstoppable pain from my feet to my hair that no body belive unstoppable with telidin with Cymbalta with oxicodone and with more than 80medications dieng in germany and nobody help😢😢😢😢😢😢😢😢😢😢😢
No way would I do hyperbolic chamber.
If you have a damage who caused CRPS, and you regenerate it through a stem cell therapy, would the CRPS fade away?
In the minute 59:31 they warn about needles and injections
日本だとCRPS患者の痛みは“頭がおかしい”と言われて精神科行きになります。
麻酔科医だけが信じてくれる。
日本では…
It's difficult trying to express the pain level to those who do not understand and haven't experienced.
So true, have you watched this video? czcams.com/video/b49DtFigbbw/video.html
Can someone get the good Dr. a glass of water,
I have to make anticoagulation treatment, and here they want me to take Sintron, meaning blood analysis every month. They dont believe we shouldnt abuse of needles