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CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

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drg24242 | @drg24242 | Jul 13, 2022
In reply to @rwinney "@drg24242 So, Gabapentin it is, and you have room to increase your dose if you find..." + (show)
@rwinney

@drg24242 So, Gabapentin it is, and you have room to increase your dose if you find you need more relief.

Norco is a hydrocodone/Tylenol mix, still an opiate, but I'm happy to hear your pain doc has a plan to work slowly on your reduction. Good news!

Bring on the 28th!!

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Thank's Rachel. Now it's on to neuroligest 7/21. Take care, Darryl

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1 reply
drg24242 | @drg24242 | Jul 14, 2022
In reply to @drg24242 "Thank's Rachel. Now it's on to neuroligest 7/21. Take care, Darryl" + (show)
@drg24242

Thank's Rachel. Now it's on to neuroligest 7/21. Take care, Darryl

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I saw my new pcp today for first time. She asked me how long I have had a pronounced heart murmur. I informed he that in my 68 years I have never been told that I have one. From what I have read on Connect, with all the stress my body has been under with crpd pain, is it true that it can start to effect internal organs or am I just being paranoid Now having to get echo. Just one more thing to add to the list. I was hoping the list may start getting shorter but I quess not. Thanks for listning. I feel better just getting it out. Darryl

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 15, 2022
In reply to @drg24242 "I saw my new pcp today for first time. She asked me how long I have..." + (show)
@drg24242

I saw my new pcp today for first time. She asked me how long I have had a pronounced heart murmur. I informed he that in my 68 years I have never been told that I have one. From what I have read on Connect, with all the stress my body has been under with crpd pain, is it true that it can start to effect internal organs or am I just being paranoid Now having to get echo. Just one more thing to add to the list. I was hoping the list may start getting shorter but I quess not. Thanks for listning. I feel better just getting it out. Darryl

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Hello @drg24242

I was intrigued by your post as I also have a heart murmur. Whether or not this could be caused by stress from CRPD pain is not something that I could answer.

I would advise you to wait until you have the Echocardiogram to see which valve is causing the murmur and whether or not there is leakage/regurgitation from that valve. Please know that there are heart murmurs that are considered "innocent" and don't cause problems with heart function. Here is a link to some information from the Mayo Clinic website titled, "Heart Murmurs," https://www.mayoclinic.org/diseases-conditions/heart-murmurs/symptoms-causes/syc-20373171.
Do you have an appointment scheduled for the Echo?

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1 reply
drg24242 | @drg24242 | Jul 16, 2022
In reply to @hopeful33250 "Hello @drg24242 I was intrigued by your post as I also have a heart murmur. Whether..." + (show)
@hopeful33250

Hello @drg24242

I was intrigued by your post as I also have a heart murmur. Whether or not this could be caused by stress from CRPD pain is not something that I could answer.

I would advise you to wait until you have the Echocardiogram to see which valve is causing the murmur and whether or not there is leakage/regurgitation from that valve. Please know that there are heart murmurs that are considered "innocent" and don't cause problems with heart function. Here is a link to some information from the Mayo Clinic website titled, "Heart Murmurs," https://www.mayoclinic.org/diseases-conditions/heart-murmurs/symptoms-causes/syc-20373171.
Do you have an appointment scheduled for the Echo?

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Hi Terese! Sorry it took me so long to get back to you. Rough pain day. First, I do have an echo scheduled for 9/19. Soonest I could get in at facility where pcp wants it done. I'm on cancelation list. Some times that helps. Thanks for link on murmurs. Somethings positive, some a little concerning but as you say in your profile one of the things you advocate, { It was educational }. Thank's again, Darryl

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drorvick | @drorvick | Jul 16, 2022
In reply to @drg24242 "I saw my new pcp today for first time. She asked me how long I have..." + (show)
@drg24242

I saw my new pcp today for first time. She asked me how long I have had a pronounced heart murmur. I informed he that in my 68 years I have never been told that I have one. From what I have read on Connect, with all the stress my body has been under with crpd pain, is it true that it can start to effect internal organs or am I just being paranoid Now having to get echo. Just one more thing to add to the list. I was hoping the list may start getting shorter but I quess not. Thanks for listning. I feel better just getting it out. Darryl

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Hi, My name is Doreen. I have had CRPS type 2 since 3_2006. CRPS can go to any body part it feels like. This is a fact. Most Cardio doctors do not know what CRPS is let alone know what it may do to a person. I am in a Face book group called Positivity with CRPS/RSD.ORG. Susan is the administrator. She will gladly answer any question you might have. Everyone in the group helps each other. No nasty posts ever get posted. Please join. We meet every evening. We go thru many books on how to live with this. We laugh a lot too. All the meeting are available in the group files. This group is recognized by CRPS.Org

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1 reply
pollysparrow | @pollysparrow | Jul 17, 2022
In reply to @drorvick "Hi, My name is Doreen. I have had CRPS type 2 since 3_2006. CRPS can go..." + (show)
@drorvick

Hi, My name is Doreen. I have had CRPS type 2 since 3_2006. CRPS can go to any body part it feels like. This is a fact. Most Cardio doctors do not know what CRPS is let alone know what it may do to a person. I am in a Face book group called Positivity with CRPS/RSD.ORG. Susan is the administrator. She will gladly answer any question you might have. Everyone in the group helps each other. No nasty posts ever get posted. Please join. We meet every evening. We go thru many books on how to live with this. We laugh a lot too. All the meeting are available in the group files. This group is recognized by CRPS.Org

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Thank you will look into it chronic pain is so hard to live with 24-7 have had it since 1989 and just gets worse I try to stay active live alone age 77 and sure could use some good advice Barb Northen Mn

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1 reply
grannyzoo | @grannyzoo | Jul 18, 2022

I hope you’re seeing an Anesthesiologist that specializes in pain management.

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drorvick | @drorvick | Jul 18, 2022
In reply to @pollysparrow "Thank you will look into it chronic pain is so hard to live with 24-7 have..." + (show)
@pollysparrow

Thank you will look into it chronic pain is so hard to live with 24-7 have had it since 1989 and just gets worse I try to stay active live alone age 77 and sure could use some good advice Barb Northen Mn

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Hi, I agree with you. The more you move the better. The more you have mental activities helps too. I had chronic pain since 1996 that went away with Radio Frequency Ablation. Then two years after I got rid of it my husband leaves his steal toed boots for me to trip over. He thought it was funny. I am 69 and live with my brother. I am going thru a real nasty divorce after 29 years. He abused me, but that doesn't matter in WA State. It is a no fault community property state. Look in to the Positivity groups for Neuropathy on Face Book. Positivity with CRPS/RSD is awesome with about 3,000 members. Everyone is friendly and helpful. The administrator is Susan. She lives in MN. We laugh and have a group meeting every evening at 8pm your time. I hope you join. I keep my face book page private. There are no nasty posts that ever get thru Susan in the group. You would be an asset to the group. Your friend, Doreen

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plakermike88 | @plakermike88 | Jul 18, 2022

Hi, I had been diagnosed with crps for about 20+years. I just want to say that you are not alone and keep on fighting, it's worth it. I will pray for you and your daughter that God will give you strength to help each other in this time. Thank you for telling us your story and keep hope alive.

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BeBold | @bebold | Sep 19, 2022
In reply to @schesse "Hello All, I was just diagnosed with CRPS after my last surgical procedure on July 27,..." + (show)
@schesse

Hello All, I was just diagnosed with CRPS after my last surgical procedure on July 27, 2017. It's in my left foot, for the first 10 weeks I was in bed taking pain pills every 2 hours 24/7. It wasn't for the nerve pain it was to glogg my mind so I didn't have to focus on the nerve pain that was intolerable. The nerve pain was so severe I was on suicide watch by my family. Once the doctor saw me he diagnosed me right away with CRPS, he schedule a diagnostic injection a week later and I had some relief for about 2 weeks. Since then I have had 2 injections with Botox which last for about 2 1/2 months with some relief but gives me some hope. He started me on Terazosin which is a medication to lower my blood pressure. I haven't been on it very long so i will try to keep you updated on my progress. Most recently I have been having similar nerve issues now in my right foot but not as severe but it's the beginning. I have to say what has worked the best is my faith and praying 24/7 to take the pain away. I did go to pool therapy at first it was very difficult all I did was cry but I stayed with it. Each pool session got better then I started to have land therapy which started out rough then it got better. Both therapist had gone through CRPS courses which makes it much easier because they understand what we go through. Another thing to watch out for is being pricked by needles, every time I am pricked with a signal needle my symptom will worsen for about 5-7 days. I am now seeing a Christian Pain Psychiatrist that is going to start with a program called EMDR for CRPS & Chronic Pain. I will try to keep you updated on my progress. At this point of our life we have to try anything because there is NO cure for this disease. One other thing I want to share with all of you. I have a brother that is a Nero Chiropractor that practices in Sweden for over 30 years now. I begged him to fly home which I offered to pay for his trip. After thinking about my condition and changing his work schedule he came home for 8 days to work his magic on me. At first he could not touch my left foot nor work on it so he started from my head and worked his way done day after day. By the time he left he was able to touch my foot with little resistance from me. This was a miracle that he was able to touch my foot, prior to this a fly could not land on my foot if so it was very painful. After he left to go back home he did some research to find a Nero Chiropractor near where I live. This wasn't easy because there are very few Nero Chiropractors in the USA. If you can locate one I highly recommend to go see them. The one he found for me was just starting to take course from a doctor in Canada. When and if I get up to it I plan on flying to Sweden to have my brother work on me for about 2-3 months. I cant imagine what he can do for me after 2-3 months after seeing what he did after 8 days. Again I will try yo keep you posted when this time comes, it may be he'll come back home before I can fly.
Everyone that has this disease, I will add everyone of you to my daily prayers.
Good Luck - Steve

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If you have the financial assets, the Spiro Clinic is the only place having su cess with a cure from crps. The don't accept insurance but might be offering more than your brother? She is from Germany and created her own program. Look it up. I sadly can't afford it but perhaps you can. I would go if I could. Website and fb page

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