Complex Regional Pain Syndrome after RCC

Kidney_Cancer_Kid
Kidney_Cancer_Kid Member Posts: 46 Member
in Kidney Cancer #1

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

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Weakness is normal after RCC surgery

    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

  • todd121
    todd121 Member Posts: 1,448 Member
    edited May 2017 #3
    Symptoms?

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

    Todd

  • Kidney_Cancer_Kid
    Kidney_Cancer_Kid Member Posts: 46 Member
    #4
    icemantoo said:

    Weakness is normal after RCC surgery

    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

    Surgeries

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

    Kidney_Cancer_Kid

     

  • Kidney_Cancer_Kid
    Kidney_Cancer_Kid Member Posts: 46 Member
    edited May 2017 #5
    todd121 said:

    Symptoms?

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

    Todd

    Symptoms

    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
    Jan4you Member Posts: 1,330 Member
    #6
    I am so sorry you are going

    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
    Kidney_Cancer_Kid Member Posts: 46 Member
    edited May 2017 #7
    Jan4you said:

    I am so sorry you are going

    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

    Some of my treatments (long)

    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
    Vivaldi Member Posts: 27
    #8
    CRPS

    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
    Jan4you Member Posts: 1,330 Member
    #9
    Vivaldi said:

    CRPS

    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.  

    Just wanted to add that today

    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
    Jan4you Member Posts: 1,330 Member
    #10
    Vivaldi said:

    CRPS

    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.  

    Just wanted to add that today

    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
    Jan4you Member Posts: 1,330 Member
    #11
    Oops.. shouldve read most

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

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