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Health Interests
Autoimmune diseases, Chronic pain, Immune disorders, Neurology (brain and nervous system)

Posts (47)

5 days ago · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

I have had CRPS for over 5 yrs so I’m sorry to hear about your situation. I have tried so many different treatments that only helped temporarily or didn’t help at all.
I was finally introduced to MFR, or Myofascial Release. It is a very specialized form of PR, but with so much more experience and specialized training.
I have been given a new lease on my quality of life since finding this type of therapy.
I would suggest to look in your area for someone who has been trained and certified by the John F Barnes treatment of MFR. Don’t accept someone who SAYS they know who to do MFR, they need to be trained in that specialty, not just regular PT.

5 days ago · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

Hi Jim,
I had a Medtronic Stim unit implanted for over a year back in 2014 and had it removed after a year of having it adjusted over and over. I had a temporary implant that I felt helped so I went and had permanent implant. I now know that it was premature in feeling it was working. I guess I was holding on with a feeling that I was getting relief. It ended up being a false relief because I wanted it to be. I now have major scar tissue that is causing pain in different ways.
I would highly recommend that you do plenty of research, look at the surgeons results, try to get testimonials before going under the knife. Once you are cut, you can’t go back ! Good luck

5 days ago · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

I have had CRPS for over 5 yrs. I have tried pretty much what all of us had tried before- epidermals, lumbar blocks, etc. My disease causes my Right Big toe to feel like an over inflated balloon that’s ready to pop. I tried a Medtronic Spinal Neurostimulator but had it removed after a year as no relief and ineffective. So I had it removed. After trying traditional and alternative medicine, I found Myofascial Release Therapy, or MFR. It has had a profound and positive in my quality of life and has given me hope of living with SOME pain, but not the debilitating pain before. I still need to take pain medications, but my quality of life has been improved beyond expectations.
In fact, I am currently being treated at the Sedona facility Therapy in the Rocks for intensive therapy. In 4 days, therapy has eliminated terrible pain in my feet when I wake up in the morning and foot pain as I’m going to bed, among other positive results that I will discuss at a later date. It’s not cheap but if you’ve tried everything, and you think there’s no hope. Think again. Even if you look in your area for a specially trained MFR therapist, it could make a huge change in your life. Might take several sessions but it’s worth it.
Good luck in finding relief.

5 days ago · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

Regarding CRPS and gut health, it’s a neurological disease with no known specific cause. Speculation but no definitive answers other than brain and the pain with no cause are not in sync.
Very little research is being done as it’s such a rare condition and big pharma won’t be able to make $$$.
Just my opinion on the lack of research.

5 days ago · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

I agree to NOT amputate as it might cause even worse symptoms, such as phantom limb pain, which in itself can be like CRPS, as there is pain where it shouldn’t.
It’s due to a trauma or accident, where the brain and the nerve connections don’t talk to each other , when the pain signal is sent to the brain, it then sends a signal back to the supposed painful area in error. There is a mis connect in the misfiring of nerves that aren’t responding correctly.
I had spinal fusion surgery 6 yrs ago, after surgery pain went away, I was left with nonstop, 24/7 nonstop pain in my Right big toe, where it feels like an inflated balloon is ready to pop, or it’s as if someone is standing on my foot 24/7. Even a bed sheet is so painful that I need a sheet lifter to sleep.
I’ve tried most every injection, acupuncture, PT, opioid pain meds. Nothing stops the pain. Gabapentum and Oxycodone provide limited relief. My life has completely changed due to this disease.
NORD- National Organization of Rare Diseases lists CRPS has listed this as a suicide condition due to its so difficult to diagnose and treat, which it can’t. For many we cope and find ways. Some can’t find a way so …..
I have found that MFR has helped change my condition and my life as it’s allowed me to begin to have some quality back to my daily living.
I will continue this discussion tomorrow.
Good luck and don’t give up. It could be worse !!

Thu, Sep 5 7:35pm · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

Yes, I had a Medtronic MRI compatible SCS for 13 months and had it removed after I tried at least 100 different settings failed. I had the implant after 2 failed back surgeries and a spinal fusion at the L5-S1. Could never get a signal that would take away ANY amount of pain over the 13 months. Was diagnosed with CRPS after fusion surgery and have been battling intense 24/7 pain ever since. I just live one day at a time.
I found MFR and has been very helpful in releasing the fascia from all the scar tissue that’s developed since. I have a weekly MFR session that has done wonders for me a little at a time, and will be going to Therapy on the Rocks in Nov for their intensive therapy program. Wish me luck.

Thu, Sep 5 3:22pm · Living with Neuropathy - Welcome to the group in Neuropathy

Thanks for an uplifting post to stay positive and keep fighting. I have to remind myself that I too will have good days and bad. I try to focus and remember the good days when my day is coming to a close.
I also tell myself – Take it one day at a time so as to not get overwhelmed with our medical issues.
So to all that are fighting- keep up the good fight and fight it one day at a time. Good luck to all.

Fri, Aug 23 7:39pm · Flaming Swords and Fireworks in Neuropathy

It’s great that you are wanting to try MFR. However, in my opinion you really need to have a MFR trained therapist to get you started. Rolling on a tennis ball is a great start, but it only a tiny fraction on what MFR is about. The ball is a part of self treatment in conjunction with the MFR therapy to be most effective. I don’t want you to feel disappointed or letdown by trying just the tennis ball as you will not get the full benefit of MFR. Just my opinion and after having been through 9 MFR sessions. I’ve found you need the therapist first, then the self treatment. Good luck either way.