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new member CRPS

Nov 21, 2015 11:01 PM

Hi everyone,
I just joined the family of pain, I have had CRPS for almost 2 yrs now. It was hard not knowing what is happening to me. Sitting and watching my life transition and my goals and plans change.
I have a 10yr old daughter and 5yr old son.
Last December I had a spinal infusion implant hoping that would fix the pain, my husband has been very supportive all the way he has been mum and dad through it all. Unfortunately 3 weeks after my surgery his blood pressure was so high he almost died. He ended up with a heart aneurysm surgery. Life seems unfair we don't have family close by, so through our pain and suffering we have to work for our kids.
Last week l almost lost mobility in my left leg, am afraid of stressing my husband going through it all over again, he has to keep his blood pressure down or it can happen again. What do I do? With my pain, I cry am sensitive to sound touch etc.
Can anyone relate?

Nov 21, 2015 11:04 PM

I also have Crps. Feet-hips and three kids 13, 11 and 8. But thankfully my husband is healthy. Speak out here and on the fb support group. Gentle hugs

Nov 21, 2015 11:08 PM

Thanks what do you tell you children, my daughter is having a hard time because the mummy daughter days are gone she doesn't feel loved by me it's hard to explain so she is slowly shutting herself out in her room

Nov 22, 2015 12:15 AM

Hopeful I'm sorry life is beating you up right now, it sounds like you have your plate filled to overflowing. I don't have CRPS but I do have chronic pain. I will be praying for you and I'm hear to listen

Nov 22, 2015 2:20 AM

I have CRPS too, I'm 15, there's another girl, Jenna with it on here too. I use a massive combo of meds to help. I used a rice box and physical therapy after starting meds.
I take:
DMSO
LDN
IODINE
GALLIUM
KAVA KAVA ROOT
MAGNOLIA BARK EXTRACT
Lemon balm
Garlic
Phenibut

Nov 22, 2015 6:30 AM

Hopeful, I am sorry that you are in the position that you are in. I can't imagine having to raise children and deal with the pain of CRPS/RSD. I give you and all of my pain family credit for those who have to work and take care of children. I want to welcome you into our community family. This is a safe forum to get your feelings out and unburden yourself. There are no judgements here. We all "get it" because we live with pain every day. There is always someone at the ready to support you when you need us and you are never alone. I have found this wonderful group of people to be a Godsend for me. I have DDD/DJD, CRPS/RSD, TMJ, long thoracic nerve palsy,Fibromyalgia, cervical spondalytic myelopathy, scoliosis, lordosis, SI Joint distinction with fractures, bilateral valgus deformities of the knees, sciatica, hypothyroidism, GERD, possible Lupus and possible Sjrogens, anxiety and depressed among other things I can't remember right now. I've been in pain at a level of 8 for the last 22 years and I can't get the levels lower than a 7 even on morphine. I've been on several meds for my nerve pain that didn't help and caused really bad side effects causing me to come off of them. I know there are many others here who live with the burning and sensitivity to touch that comes with CRPS. It's not an easy thing to live with. Some, like my sweet friend Ferretbandit use supplements with success but still goes through flares and has times of extreme pain that do not allow her to walk. I am sending you gentle, welcoming {{{Hugs}}} and prayers that you find the support, caring and information that you need by being here with us.🌻🙏🏻

Nov 22, 2015 12:15 PM

Thank you everyone for your warm support and encouragement, I do feel I have found a family that understands.
Ferretbandit, I will look into what you are using, I started taking iodine a month ago, am also learning about the anti inflammatory diet.
Jenna is in my prayers I will continue to pray for all of you.
Thank for all the support

Nov 23, 2015 8:56 PM

Welcome Hopeful! I'm just trying to catch up the past three days. AlwayZ and everyone pretty much covered everything. I'll add you to my prayers. 🙏🌼

Nov 23, 2015 11:25 PM

Hopeful welcome to our family will pray and sending hugs your way.

Nov 24, 2015 12:58 AM

Welcome to our pain family Hopeful.

Nov 24, 2015 8:36 AM

Thanks everyone I have not been feeling too well since yesterday, it's starting to get cold and it's not helping at all, in bed today can't do much

Nov 24, 2015 9:23 AM

Hang in there Hopeful. We're here for you and you got this!! {{Hugs}}💕

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