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Complex Regional Pain Syndrome after RCC

Kidney_Cancer_Kid
Posts: 27
Joined: Feb 2017

How many of you developed CRPS or fibromyalgia after the renal cell carcinoma?  What are you doing to deal with those horrors?

I wish I had the power to remove cancer and other terrible conditions from our human experience.  I hate CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am angry and my pain level is up right now!

Sorry.

Kidney_Cancer_Kid

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

K_C_K,

Not sure when you had your surgery, But the weakness yoou descibe may be a normal part of the post surgery experience. It takes awhile to fully heal.

 

 

Icemantoo

Kidney_Cancer_Kid
Posts: 27
Joined: Feb 2017

The surgeries were 2003 (right kidney nephrectomy) and 2010 (left kidney radiofrequency ablation).  The CRPS started with the 2003 surgery. 

Kidney_Cancer_Kid

 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Can you describe your symptoms? Are they the result of your nephrectomy, or medication or what exactly?

Todd

Kidney_Cancer_Kid
Posts: 27
Joined: Feb 2017

After surgery 1, I developed fibro and CRPS.  With CRPS, I have burning, tearing, throbbing, cutting, and stabbing sensations on the right side.  Those travel down my leg.  My side looks red and puffy at times.  In the area, I am super sensitive to touch.

Fatigue, body aches, tender points, sleep issues, etc. are my usual symptoms fibromyalgia problems.

Kidney_Cancer_Kid

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

I am so sorry you are going through all this pain and discomfort. Have you been officially diagnosed with fibromyalgia and treated? Just like anxiety many docs blame things on fibromyalgia even without a proper exam.

If it were me, i would consult with alternative methods of treatment for this pain. Look up alternative health clinics. Some MDs actually participate. There are less intrustive methods to treat this pain, besides loading you up with medications. Don't forget to get your immune system healthy by taking probiotics and detoxing the liver (gently). It makes a huge difference for your body to reduce inflammation. Chiropractors that use the B.E.S.T techniques have more training in this area, they are not just bone crunchers. BTW bone crunchers are not a good method of chiropractic treatments. My chiropractor is a guru with much training, including neurology.

Hope you find the best providers and get relief soon!

Hugs, Jan

Kidney_Cancer_Kid
Posts: 27
Joined: Feb 2017

Thanks Jan4you,

Fibro and CRPS are some of my diagnoses.  I start research on conditions as soon as they are put in my medical file.  I think you research too, right?

I am a proactive person.  These are some of my treatments.  I make no recommendations, since I'm not a doctor (I won't get in trouble with this disclaimer, correct?).  These help me.  Also, financial issues limit some of these. 

Copied list from my files:

Medical Pain Treatments

Yoga

Yoga breaths

Stretches

My normal daily exercises to build tolerance to any medical situation

Exercises to stop or lessen my pain

 Rest

 Self-massage

 Massaging devices

 TheraCane

 TENS unit (Transcutaneous Electric Nerve Stimulator)

 Acupressure

 Acupuncture – doctor

 Chiropractic - doctor

 Warm/hot showers, gel packs, washcloths, heating massagers, and heating pads

 Cool/cold showers, gel packs, washcloths, ice cube wrapped in towels/plastic bags

 Essential oil mixtures as rubs

 Essential oil mixtures to inhale and distract from the pain

 Guided imagery

 Relaxation CD/calming music

 Prayer

 Meditation

 Hematite

 Eating cabbage

 Eating pineapples

 Eating ginger

 Eating other spices

 Over-the-counter pain rubs, gels, patches

 Prescriptions

 Acetaminophen

 Aspirin - rarely

 Ibuprofen - rarely

 Naproxen sodium - rarely

 Distractions

  Kidney_Cancer_Kid

 

Vivaldi
Posts: 27
Joined: Jun 2013

I had CRPS before my kidney surgery.  Kidney surgery just added another layer. It took a while, but through massage therapy and using TENS I was able to reduce the pain in the nephrectomy area. You really need a pain specialist who works with CRPS. I have had it twenty years and had lots of good pain clinic experiences. I would caution, absolutely no chiropractors for CRPS, manipulation with hypersensitive nerves is just a mistake. Additionally, with CRPS I was cautioned not to use cold packs or ice. I empathize with our pain, I know how difficult it is. Best of luck, there is a very good CRPS clinic in Vero Beach, Florida, Hooshmand and associates it was called.  He is retired, not sure if there is still the same name.  He was the worlds leading expert on CRPS.  They do consults all over the world.  

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Just wanted to add that today, most chiropractors do NOT manipulate the spine via bone cracking. They use the nerve pathways to find obstructions/mal alignments to unblock areas that they body is trying to heal. ALSO many are not doing Lazer therapy for areas that have been cut via surgery or trauma. It is amazing what they can do. 

You need a chiro who is trained in B.E.S.T or similiar therapies. Not invasive, and it works. If they cannnot "fix" something, they are brilliant at knowing when to refer out. I know. I have an amazing healer chiropractor. 

Pain specialists can help with pain but not get to the root of the cause  in my experience. 

Jan

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Just wanted to add that today, most chiropractors do NOT manipulate the spine via bone cracking. They use the nerve pathways to find obstructions/mal alignments to unblock areas that they body is trying to heal. ALSO many are not doing Lazer therapy for areas that have been cut via surgery or trauma. It is amazing what they can do. 

You need a chiro who is trained in B.E.S.T or similiar therapies. Not invasive, and it works. If they cannnot "fix" something, they are brilliant at knowing when to refer out. I know. I have an amazing healer chiropractor. 

Pain specialists can help with pain but not get to the root of the cause  in my experience. 

Jan

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Oops.. shouldve read most chiro ARE doing LAZER light therapy. 

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