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.

@lauraj155

@mam14, @JustinMcClanahan, I have been trying to figure out what has been going on with my feet since 2005. I have researched like a mad woman and my gut tells me I have CRPS. I really hope to heck that I am wrong. I have taken pictures of my feet this past week for documentation. Most of the time they feel cold to the touch and hurt the most in cold, damp weather. If I dangle my feet down and leave them in that position for a few minutes they turn a dusky purple color and get very cold. This brings on a lot of nerve pain. I also have pics of when they feel quite warm and turn red and look swollen. This happened 14 years ago when I had a slight ankle sprain and the pain was very disproportionate to what was only a minor injury. Then soon after the pain spread to my left foot. I saw many doctors who all had a different diagnosis and no one could really figure it out. I quit seeking treatment out of frustration and disappointment. My PCP was very kind and tried to get a referral to go to Mayo but of course it was denied by my HMO plan. I just lived with it and gradually through many, many years it got progressively better until this past January of 2019 my big toe started getting sore and soon all the crazy nerve, burning and all other symptoms erupted again. My Podiatrist was perplexed because my X-ray of left foot showed slight osteoarthritis and MRI looked pretty normal as well. I see the Neurologist on Friday and I will bring in these pics I took and I hope these will help with getting a definitive diagnosis. I saw a Pain Management doctor last week and he doesn’t feel I have CRPS just because I let him touch my foot and didn’t immediately back away when he tried to. From what I have read and understand some people with CRPS can endure light touch. But when he started squeezing my big toe joint and my toes that hurt like crazy and into the entire next day. I would just like to know what others think that have CRPS. I know everyone is different with this disorder. Thank you. -Laura

Jump to this post

Hi Laura. Some of what you described reminds me of my Raynauds and my small fiber neuropathy which are both in my feet as well. I just had a nerve study done on my lower extremities and was dx with severe sensory and motor neuropathy in both legs. Just throwing a few things out there for you to investigate. One symptom that stands out as being CRPS is the pain on standing in one spot for a few minutes. I have a great pain management doc who is brilliant at what he does and in his knowledge of CRPS. Besides being brilliant, he is also familiar with his own pain needs which makes him more sensitive to others. Hope you can find such a doctor.

REPLY
@barbbie

Hi Laura. Some of what you described reminds me of my Raynauds and my small fiber neuropathy which are both in my feet as well. I just had a nerve study done on my lower extremities and was dx with severe sensory and motor neuropathy in both legs. Just throwing a few things out there for you to investigate. One symptom that stands out as being CRPS is the pain on standing in one spot for a few minutes. I have a great pain management doc who is brilliant at what he does and in his knowledge of CRPS. Besides being brilliant, he is also familiar with his own pain needs which makes him more sensitive to others. Hope you can find such a doctor.

Jump to this post

I have CRPS and live in Alabama. I travel nearly 5 hours to a neurologist but I’m not satisfied at all with the results. Where are you from?

REPLY
@mam14

I have CRPS and live in Alabama. I travel nearly 5 hours to a neurologist but I’m not satisfied at all with the results. Where are you from?

Jump to this post

I live in upstate NY

REPLY
@barbbie

I live in upstate NY

Jump to this post

I also don't see a neurologist for this but a pain management doctor.

REPLY
@barbbie

I also don't see a neurologist for this but a pain management doctor.

Jump to this post

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.

Liked by mlross4508

REPLY

Hi I was recently diagnosed with crps it was caused by a injury on the job, I fell off a ladder and broke my foot in three places.I had surgery and had a plate and pins put in my foot it was healing ok then my foot starting becoming red and swollen and the burning pain is unbareable.I have seen my surgeon and a pain specialist and have pt three times a week it does improve then flare ups happen and im back to square one,im at my wits end and my medical benefits are running out for it . I am basically being forced to return to work still in pain or I lose my medical and life insurance my only alternative is cobra at a payment of over a 1000.00 a month. Im so lost and pain hurts but I guess I return to work to avoid loss of medical for me and my child who is adhd and on expensive meds himself. kevin I live in wa state

WIN_20190323_16_43_40_Pro

REPLY

I have been taking medications and had some sympathetic blocks put they don't last long the shots that is.The meds help somewhat but have caused me depression and weight gain so im not sure there even worth using.

REPLY
@kevinmicheal662

Hi I was recently diagnosed with crps it was caused by a injury on the job, I fell off a ladder and broke my foot in three places.I had surgery and had a plate and pins put in my foot it was healing ok then my foot starting becoming red and swollen and the burning pain is unbareable.I have seen my surgeon and a pain specialist and have pt three times a week it does improve then flare ups happen and im back to square one,im at my wits end and my medical benefits are running out for it . I am basically being forced to return to work still in pain or I lose my medical and life insurance my only alternative is cobra at a payment of over a 1000.00 a month. Im so lost and pain hurts but I guess I return to work to avoid loss of medical for me and my child who is adhd and on expensive meds himself. kevin I live in wa state

Jump to this post

@kevinmicheal662 I have a friend who also broke her foot and had reoccuring problems and it was caused by an infection and reaction to the hardware that had been placed because of the fracture and she was close to loosing her foot. She had another surgery later to remove the hardware, and many repeated surgical procedures to clear the infected tissue, and had a wound vac that was pulling fluid off her foot and some long rehab stays. You might want a different opinion other than the doctor who performed your procedure. If this was a work related injury, you might want to consult an attorney about that. I think your employer is responsible for the medical bills and lost wages and loss of use award, and you shouldn't be running out of your own health insurance benefits because of a work injury. Your employer obviously has rules about how much time you can be out of work, and if you are not at work, they can force you to pay all of the premiums for group health insurance, their share and yours. That being said, it's not an easy position to be in. They could claim that you physically can't do the job and let you go after you come back to work. Their motivation could be to cut their losses. An attorney could advise you about your situation and how best to protect your interests. I wish you the best.

REPLY
@kevinmicheal662

I have been taking medications and had some sympathetic blocks put they don't last long the shots that is.The meds help somewhat but have caused me depression and weight gain so im not sure there even worth using.

Jump to this post

My husbands pain doc in Jville Texas has given him lysis of adhesion injections that have worked wonders. They eat at the scar tissue and relieve the nerves. His name is Peter Scirianni. You should research him.

REPLY

ty ill look him up

REPLY

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

REPLY
@kevinmicheal662

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

Jump to this post

@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.

REPLY

@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/

REPLY
@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/

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
Please login or register to post a reply.