CRPS - anyone suffering with complex regional pain syndrome
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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Thank's Rachel. Now it's on to neuroligest 7/21. Take care, Darryl
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
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?
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
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
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
I hope you’re seeing an Anesthesiologist that specializes in pain management.
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
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.
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