CHRONIC PAIN ~ RSD/CRPS ~ SUPPORT GROUP

RSDHOPE.ORG

RSDHOPE.ORG

NEXT MEETING: Call Ted at 941-330-5615

Sharon Barrett, Attorney At law

Sharon Barrett, Attorney At law

100_2640We also meet via email.  Call or email to connect with us.

 Disability Attorney, Sharon Barrett.

CHECK OUT THE FLAME QUARTERLY NEWSLETTER for chronic pain and CRPS/RSDS overcomers.

 

Support CRPS/RSDS and look nice, too!  Kelara Lacquers donates $3.00 to CRPS/RSDS research per every $9.00 bottle of “PUT OUT THE FIRE” nail lacquer purchased. 

Something new for treating CRPS:  NEWTREATMENT

VISIT www.theacpa.org for valuable resources including a resource guide to pain medications and treatments.

Check out www.rsdhope.org for great insights into CRPS and to realize you are NOT alone.

HERE IS AN ARTICLE FROM WWW.RSDS.ORG

By:  Stephen Bruehl, PhD

LINKS BETWEEN CRPS AND PSYCHOLOGICAL FACTORS

The rationale for employing psychological interventions in CRPS patients derives generally from their recognized utility in management of non-CRPS chronic pain conditions, and more specifically, from theoretical pathways through which psychological and behavioral factors might directly interact with pathophysiological mechanisms believed to underlie CRPS. This latter theoretical rationale suggests the possibility that psychological interventions may not only be palliative in CRPS (which is almost assured), but also could have a potentially beneficial impact on underlying pathophysiology of the disorder in the context of multidisciplinary treatment.

 To read more of this article, click here.

23 Responses to CHRONIC PAIN ~ RSD/CRPS ~ SUPPORT GROUP

  1. tlhutch1851 says:

    Hello fellow chronic pain and RSD sufferers. Please feel free to use this space to vent or chat or to discuss …anything. I thought a good topic for right now might be…what would you like to see happen during our support group meetings? (in order to post, scroll down at the right and click “log in” follow instructions; if you have trouble, call me at 981-9391)

    • tlhutch1851 says:

      We can also use the Joshua1nine Facebook page to chat. Just friend request Joshua1nine on FB. Give it a try. Do a search for Joshua1nine in Bradenton/Sarasota area. Call if you have troubles.

  2. tlhutch1851 says:

    “It’s in the darkness that the images hurl themselves at her without mercy, Chantale sees, hears it all again as if it were yesterday: the blood pouring down her father’s face; the glint of the machetes chasing her through the stinging brush; her baby wailing as she holds him above the water that carries them away from violence; and finally as always–the last clods of earth filling the graves of her infant son and husband. And then: the faces of the men who ruined her life. Especially John’s. John, a former neighbor and friend of her father’s since she was a child–the very man who had prepared the celebration feast back when she was confirmed in the church. John, whom she hasn’t seen for 14 years, who came to meet her a t the church yesterday, begging her for forgiveness, or at least mercy.

    I had previously read a book on the Rwandan genocide of the Tutsis at the hands of the Hutus. This would be as if here in America the people of Irish descent decided to do away with those of British decent (neighbors turning against neighbors). It was a blood bath; no one escaped without loss. When I read this article I thought about how many people go through such horrific things everyday all over the world.

    Who am I that I should expect God to answer my prayers for less pain when He has all of this to worry about??? “What is man that you are mindful of him, the son of man that you care for him? (Hebrews 2:6)” The answer to that question is in the rest of Hebrews 2. “You made him a little lower than the angels; you crowned him with glory and honor (2:7) and put everything under his feet…. (2:8) But we see Jesus, who was made a little lower than the angels, now crowned with glory and honor because he suffered death, so that by the grace of God he might taste death for everyone. (2:9) In bringing many sons to glory, it was fitting that God, for whom and through whom everything exists, should make the author of their salvation perfect through suffering. (2:10)

    God is so good!

  3. tlhutch1851 says:

    The following comes from IN TOUCH magazine. If you’d like a subscription to the mag, go to their Site at http://www.intouch.org. Subscriptions are free.

    I admit that I often don’t understand why bad things happen. Even so, I believe that God has a purpose for everything He does or permits. My faith is rooted in the biblical principle that says the Lord is sovereign (Ps 22:28). He is in absolute control of this universe the natural and political climate of this earth, and my life and yours.

    When we are in the midst of a trial, it is hard to resist crying out, “God. Why is this happening?” Sometimes we get the answer and sometimes we don’t. What we can be sure of is that nothing happens by accident or coincidence. He has a purpose for even our most painful experiences. Moreover, we have His promise to “cause all things to work together for good…” (Rom. 8:28).

    Seeing in advance how the Lord will work evil or hurt for our benefit is very difficult, if not impossible. My limited human perspective doesn’t allow me to grasp His greater plan. I can, however, confirm the truth of this biblical promise because the Father’s good handiwork appears all through my pain, hardship, and loss. I have experienced Him turn mourning into gladness and have seen Him reap bountiful blessings and benefits from my darkest hours. (IN TOUCH)

    What are your thoughts about God’s sovereignty?
    Share a time when God turned your “mourning into gladness” or caused something in your life that seemed bad to “work together for good.”

  4. marciwgardening says:

    I have the 2nd severe bout with RSD after breast cancer surgery. Could RSD sufferers remind me how long it usually is until I will get relief. Severe pain for soft clothing or sheets to touch the area. All my activities are on hold. Thanks.

    • tlhutch1851 says:

      Hi Marci.
      So sorry about your pain. Are you seeing a pain doctor? Pain flares can last anywhere from a couple weeks to several months. Try an Epsom salt bath–as warm as you can stand it.

      • athena2day says:

        I actually take the epsom salt and make a paste, and rub itto the really sore parts or legs that are cramping up. it stings a bit, but it works. they also sell Magnesium oil in Health food stores (which is essentialy epsom salts in a liquid form). I use it. every day. I wish you less pain and may God help you and heal you.

  5. tlhutch1851 says:

    This is Day 1 from my book “Conquer the Quicksand.” Writing the book and then re-reading it dragged me from the “quicksand of depression and anxiety to solid ground. I could not have gotten back without relying on the Lord.
    Day 1 Philippians 2:14
    “Do everything without complaining or arguing.”

    My journey out of depression begins, today. I will capture every negative thought and replace it with a Bible verse or a good deed. I will stop, wherever I find myself, and eliminate the less-than-constructive thought. I will either immediately do something nice for someone nearby, or if my Bible is handy, I will find a verse to commit to memory that will erase the negative thought from my mind.

    A couple uplifting verses to have readily available…
    ~ Deuteronomy 3:22 Do not be afraid…the Lord your God Himself will fight for you.
    ~ Job 5:2 Resentment kills a fool and envy slays the simple.
    ~ Psalm 119:50 My comfort in my suffering in this: Your promise preserves my life.
    ~ Psalm 119:52 I remember your ancient laws, O Lord, and I find comfort in them.
    ~ Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
    ~ Philippians 4:4 Rejoice in the Lord always. I will say it again: Rejoice!
    ~ Philippians 4:13 I can do everything through Him who gives me strength.

  6. tlhutch1851 says:

    Philippians 4:4
    “Rejoice in the Lord always. I will say it again: Rejoice!”

    Today I will choose to rejoice. Instead of focusing on my anxiety and depression, I will list ten things that I am thankful for and three people who were instrumental in introducing me to the Lord. I will take a couple minutes to say a prayer of thanksgiving for those people and things, and I will praise God for them throughout the day. When the darkness of depression threatens, I will force it away with a thankful thought (Conquer the Quicksand).

    According to the June 2005 Consumer Report on Health, while researching the impact of physical activity on disease, “across the board, researchers found that even a little exercise boosts energy and reduces fatigue” (Energizing people who have diseases).

  7. athena2day says:

    hello

    i am struggling terribly with RSD, I wasDX’d in 04 with RSD, not CRPS, even tho some are saying they are one in the same. I am so isolated, I have lost so many friendships, ppl who don’t suffer from this kind of pain 24/7 have NO IDEA what is is like to live a day in the life of a person , like myself ,who constantly gets told that “I don;t look sick” meaning, that , what, because i am not missing a limb, or brain dead (even tho i feel that way most of the time) . I have been a lover of the Lord for over 25 yearws. iam a born again christian, and i am a fighter. i also have a support group0 on FB called ” RSD/CRPS information, “but you don’t look sick”. I have been to many Dr’s, pain, Drs’ neuro/psyc’s, family medicne Dr’s. I’ve had what seemsa to be 50 million tests and have finally hired a disability attorney. that was the hardest thing for me to do, I felt like a failure, by admittting that I am handicapped and my physical world has changed dramatically. I have 2 wonederful teen sons whom I love dearly, and husband, but they don’t even make an effort to educate themselves about this disease,so they have no clue as to why I have changed so much, don’t leve the rooom, or even my bed that much , and have not been the same since 4-5 yrs ago. I am tired of being treated like a criminal for wanting to live my life w/o being in excruciating pain 24/7. I also have several herniated discs, they are herniated in the opposite direction , and i have my lower 3 discs L4-6? and S1 that are crushed and are disentigrating more and more as time passes. I have fought this depression with scripture, I pray, i do Bible Study everyt morning, yet i feel like a wall has been built between The Lord and I. I am not and would never consider taking my life, but I can understand wny some ppl would take that route, when no one gets you, and you lose everything that once defined you, it is mind boggling. then to have Dr.’s treat you as if you are a druggie or just making it up, it can be enough to make you want to just end the horrid cycle.I ask for prayer, for wisdom, for strength, for grace and favor. I need God to send me a friend. I am so lonely. that sounds so desperate, and i hate that…..but it is really getting to me. I realize that there is so much more going on in the world today that is shocking and Sad, but i am being a realist, living in my world.

    • athena2day says:

      wow, i sound very negative. I have no idea why I am so down. just years of faking it, trying to be superwoman for my family. I am just worn down. I feel like a big heel for coming here and just being so real. I can quote all the scriptures i want, and i can do cognitive feedback all i want. i’ve tried it all. I have to give this to God. It is so so so so so to much for me to deal with any longer. I am sorry for sounding so negative. I wouls love to come to the meetings, just driving there might pose a problem. i get numb when i sit for more than 20 mins or more. I will pray and ask God to give me an answer.
      God bless anyone who reads this and lifts me up in prayer. I am as always, praying for an end to Rsd, and for all of us who have to live oir lives around it.

    • heartbroken says:

      Hi, I just signed up and when i read what you wrote, you wrote about my world exactly only I have 2 daughter and 1 son and my husband is divorceing me after 14 years together and 12 married.and he keeps saying because i wouldn’t do things anymore and I couldn’t clean, which i did some, i just couldn’t do everything. i found him talking to other women and i have been soooo heartbroken and more depressed because i really love him sooo much. and this all came out of no where and i am soo hurt by him and everyone blames me. but i was like you and stayed in bed and to educate them but they didn’t care. sometimes I wish i could just give up. but i also have 3 1/2 grandchildren and I could never do something like that to them or my kids. my kids though have learned to walk all over me, so i feel soo alone. We could all use a friend.

      • tlhutch1851 says:

        You’re not alone, Heartbroken. I have met more RSDers and chronic pain sufferers than I can count who are now alone because their “significant others” just couldn’t handle it:-(. Problem too is that pain is so invisible. Have you tried sending them to http://www.rsdhope.org? It gives great insight into the disease. If that is not your pain, let me know and I will send you another link. Meanwhile, I am praying for you. I am so sorry about ALL of your pain. It is not fair, but know that The Lord WILL bring to you beauty from the ashes of your life if you hold on to Him.

        • heartbroken says:

          Hi thank you. I have tried and yes i have had RSD since about 1998. i also have have fibromialgia. there used to be years ago a free book you could print out and I did and showed him and my kids and no one cared to read it. i feel so empty.

          • tlhutch1851 says:

            So sorry. Are you anywhere near Sarasota? Wish u could meet with us at support group meeting. It is at Living Word Christian Store. Fruitville rd. Tuesday, May 7 at 7 pm.

  8. tlhutch1851 says:

    Hi Athena2day.
    I am lifting you up in prayer right now. I am so sorry about your pain. I have had CRPS/RSD since 2006. I know what you mean about people not understanding. “You still have that?” Touching my arms or hugging me and when I cry out or shrink back. They shake heads or freak. Good move to apply for disability. It will take some of the burden off of you. This is a disease from the evil one. We have a support group that meets in person if you’d like to share in person (not sure where you are located). The group meets monthly in Sarasota. We also meet via email (I will email you that info. I truly wish I could hand you a miracle. I know that Jeremiah 29:11 says that God has a plan for us — not to harm us. So I believe that the Lord will carry us through and out the other side — STRONGER. Have you checked into a spinal cord stimulator? It has reduced my pain level from constant 10 to 5-6. Hang in there…

  9. Amy Biza says:

    Hello everyone
    I have been suffering from crps since having neck surgery in Sept 2011. It started in my left hand and had progressed to my right hand before I was finally diagnosed. I have seen a neurologist, two orthopedic surgeons, and one pain management doctor. The pain management doctor is pushing for me to get a spinal stimulator and refuses to help me with anything less invasive. I can’t bring myself to go through another surgery. I am not taking any pain meds because I have seen how addicting they can be. I am trying to live everyday just dealing with the pain, but sometimes i just can’ t take it and it seems like nothing will ever take the pain away. I live in Sarasota and I am hoping someone can recommend a doctor who might be able to help me or a treatment available locally. I have had the sympathetic nerve block injections. I just feel like I have reached a point where I don’t know where to go next, I am just so tired of the pain! Please let me know if you have any suggestions.
    Thank you!

  10. tlhutch1851 says:

    So sorry about your pain. I’ve had CRPS RSD since 2006. Not fun. I wish I had a magic word for you to take your pain away. I know how you feel about not wanting to go through surgery. Surgery is what caused my RSD in the first place! We have a CRPS support group meeting at Living Word Christian store on Fruitville Rd tomorrow (Tuesday) at 7pm if you want to meet with others. Some ideas for relief are hyperbaric o2 chamber, lymphatic massage. Feel free to email me terri@joshua1nine.com. I can put you into our group email, so you can contact members to get more direct info about docs. Have you visited http://www.rsdhope.org, yet? I hope to meet you tomorrow. I will be praying for you.

  11. tlhutch1851 says:

    I recently heard a message that prefaced the Muppet Movie. Anyone remember it? It is about Kermit and friends journeying to Hollywood to follow a dream. Kermit has promised himself not to let ANYTHING get in the way of his dream. Along the way the gang’s car breaks down in the desert and the dream seems derailed, Kermit seems downcast – about to give up. Then, following a fitful night’s sleep, he has a dream and wakes with renewed resolve to press on toward his goal, which is to make millions happy.

    Each of us has (or had, depending on how far into the desert we’ve derailed) a dream – a purpose. We are called to press forward to fulfill that purpose no matter what life throws at us.

    Granted, we have a much heavier burden to bear than a broken down vehicle in the desert. We wake up, sometimes every couple of hours, and then greet the morning wanting to bury our heads in the pillow and beg to never awake again. Pain is a diabolical tool of the evil one. All the more reason to stare it down and not allow it to stop us from realizing our purpose.

    I am not saying it will be as easy as it once was, but it is much more rewarding than burying our heads in that pillow. Something amazing happens when we take our focus off the pain and turn it toward a goal—even a small one. When the pain is not first priority anymore, it no longer consumes us. It can’t win if we do not allow it to win.

    Jeremiah 29:11 says, “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

    That’s a promise for ALL of us — not just for those who are NOT in chronic pain.
    I’d love to hear some thoughts…

  12. tlhutch1851 says:

    Okay, so maybe the Muppets are a bit juvenile. I have just been reading and hearing (and feeling) about such high pain levels in so many of my chronic pain and CRPS friends. Wanted to try to get us lifted up and out of the HIGH pain zone. I have had success using praise C.Ds (or my I-pod or whatever music source). I slap on my Ear-buds and crank the tunes. Of course, then I sing — make a joyful noise. I praise the Lord until He lifts me beyond the pain. It is an amazing experience. I know the pain is there, but I am set apart from it, blanketed in relief and peace. Feel free to share some thoughts or questions…

  13. Marilyn says:

    I had a 4 pt fusion and scaphoid removed early June 2013. Immediately after surgery I had stiff fingers and all symptoms of CRPS Has anyone had the same experience? I had a nerve block during surgery that was given under my arm. I feel like I have nerve damage. I have been going to PT 2 hrs 5 days a week with little improvement. I’ve taken lyrica with a little relief. Anyone else out there with a similar experience?

    • tlhutch1851 says:

      I have nerve damage and CRPS, lots of stiffness in my fingers in the beginning, but with PT I was able to get back MOSt of the movement. Lyrica helped me a bit, but I couldn’t stand the side effects. How do you do with the side effects?

  14. Daniel Payne says:

    Are you guys familiar with Calmare Therapy? My 16 year old daughter has had CRPS/RSD for two years. She’s had the nerve blocks, lidocaine injections, and unsuccessfully tried the SCS, none of which provided any relief. We live in the Florida panhandle but she is currently in New Jersey getting booster treatments. This is our second trip and her pain after both trips was reduced to a “0″. It is not a cure but we’ve met patients who are in remission and we hope to eventually get there with this treatment. Please share with your members. It’s given us hope for the first time.

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