Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

ty yes it is a scary position to be in, and yes I think they have every intention to fire me

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@kevinmicheal662

ty yes it is a scary position to be in, and yes I think they have every intention to fire me

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@kevinmicheal662 Also consider that because this is a public forum, your employer might find this and use anything you say against you and you have posted a photo that identifies you. Don't identify your employer here . You can also use private messages. If you contact Colleen, she could remove a post. It may vary from state to state, but you can usually not have to pay a work comp lawyer until there is a settlement, and then it is a set percentage for attorney fees set by the state, so it doesn't hurt to ask for help or to contact your state board about this. Your employer has already contacted their own attorney and will be looking for evidence in your job performance that could help them dismiss you. A lawyer who understands the system will have greater success than a patient trying to do this alone. Your employer is looking to dismiss this and reduce their legal and financial risk, and because you are still having problems, the medical bills will continue. A work comp award is usually higher if you are disabled and can't continue to work, and this could be the beginning of a long term disability. You need to get the best medical advice you can now to have the best outcome. If you do receive a work comp settlement, your health insurance plan will ask your employer to repay them for the expenses of your medical care, and that would erase the running out of benefits and lifetime payout caps on your medical care with that insurance company. Document everything from the time of the accident onward, and get copies of all your medical records now. You would need that to go forward, and there may be things documented in the records that are meant to discredit you or errors. If you have been sent to an "independent medical examiner", this is what happens and they look for reasons to avoid paying the bills. Maybe that won't happen with a specific accident causing an injury, but it is commonplace for other work related claims.

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@kevinmicheal662 You could also look into Myofascial release with a physical therapist. MFR can break up fascial scar tissue that causes nerve compressions. I started a discussion on MFR to share information because it has helped me so much. It isn't a quick fix, and you will have to work through layers of tight tissue. Surgery causes scar tissue in the fascia, and MFR can break that up. I have done MFR in therapy for thoracic outlet syndrome and spine surgery and have been doing that for a few years. Here is the link. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter

@kevinmicheal662 You could also look into Myofascial release with a physical therapist. MFR can break up fascial scar tissue that causes nerve compressions. I started a discussion on MFR to share information because it has helped me so much. It isn't a quick fix, and you will have to work through layers of tight tissue. Surgery causes scar tissue in the fascia, and MFR can break that up. I have done MFR in therapy for thoracic outlet syndrome and spine surgery and have been doing that for a few years. Here is the link. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Hi.
I too have had success with MFR. When searching for a therapist, be sure and verify that the therapist is qualified and trained for MFR. Many people might refer a massage therapist, but not realize that not all are trained in that discipline.
Good luck.

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@mam14

I have a local pain management doctor but for the most part, I just get prescriptions from him every month. Nothing else has helped. It seems that most local doctors have very little experience with CRPS.

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I too have a pain Mgmt Dr, for my monthly prescriptions. I ask the Dr every time is there something I can do or try to help with my CRPS. Nope is the answer too many times that I’ve given up asking anymore.
Scary, but I walked into another local pain management center near my home and inquired about their dealing with CRPS. The 2 people at front desk looked at each other as if it’s the first time they had heard that term and looked at me as if I had 2 heads. When one said they would go check, I said thanks but no need. Maybe they were not aware of the term being at the front desk, but my clinic they don’t hesitate and will immediately say yes. Be aware and ask the right questions. Good luck.

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Im so sorry you have been diagnosed with this horrible didease. You won't want to talk to me. I'm taking gabapentine. The onlyreason I know I works is if i miss a dose. Althoughi have been told they will never let me suffer. After 6 Drs I'm in screaming pain every waking moment. I sleep well fortunately. Ive been dealing with it for 2 years 4 months. Sorry i cant help you.

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I am asking for a friend who has a lot of female problems. She has familial hemiplegic migraines (inherited migraines that mimic stroke symptoms). Also has endometriosis, fibromyalgia, seizures, and abdominal migraines. She is on a lot of opioid pain meds that in my opinion are making things worse. I want to help her, but don't know how. She has had a hysterectomy 2 years ago and kept 1 ovary.

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@confused1955

Im so sorry you have been diagnosed with this horrible didease. You won't want to talk to me. I'm taking gabapentine. The onlyreason I know I works is if i miss a dose. Althoughi have been told they will never let me suffer. After 6 Drs I'm in screaming pain every waking moment. I sleep well fortunately. Ive been dealing with it for 2 years 4 months. Sorry i cant help you.

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@rsnowflake

I was diagnosed a little over a year ago. It started after a broken ankle. It never really healed. Got purple and blue..really bizarre. Went back 2 orthopedic surgeon and he knew someone who studied crps for 2 years at Jefferson hospital in Philadelphia. I was very lucky 2 get diagnosed early, but it all went down hill after that. I got a nerve blocker on my leg. It worked great. Unfortunately it jumped quickly 2 my arm about a month after the nerve blocker. I didn't get that lucky that time....it got really bad and nothing worked. So I got a spinal implant. Sounds scary, but saved my hand!!! They put 2 leads in in case it jumped 2 my other arm...which it did. I use an ipod to control my pain day 2 day. Weather plays a big part of good and bad days, and so is stress. So try and find something just for u 2 do on those rough days..... really! I'm a 45 year young woman and I'm coloring to calm me down and I listen to music and tune out the pain. Would like to talk more I'm rsnowflake!

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I have Chiari malformation and the nerve pain is hell! I can't sleep from the pain,and really need help blocking it out! How do you do that??

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Hi there, I was diagnosed with CRPS Type 2 (Causalgia) in August of 2018 although it actually developed after my right TKR in May of 2017. The only reasons I was diagnosed? I knew something was wrong with my body and it wasn't going away and getting "better with physical therapy." It wasn't in my head. I worked in the healthcare field as a pharmacist for 22 years and knew how it operated, especially in the rural state of Wyoming where it is hard to get informed care. I never gave up even after eight healthcare providers told me I was "normal" or the pain would subside with "time and rest," even after fourteen months.
To this day, I still have to do my own research for pain management and treatment and consult my neurologists and primary care before accepting recommendations from my current pain management provider because she isn't versed in the latest therapies for CRPS Treatment especially with someone who has grand-mal seizure disorder and migraines as well as being a recurrent high-risk C difficile infectious colitis patient.
She's made serious treatment errors that I've only managed to stop on my own by calling my other doctors and consulting my PT myself BEFORE taking the medications and I'M a pharmacist! Can you imagine what could have happened to someone who wasn't a healthcare provider?
The point is to do your own research. Be informed and know about your health, medications, conditions, and treatment options before you go to the doctors and definitely before you start them. Consult ALL your providers! Don't assume anything is being done on your behalf.
It can save your life.

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