Sunday, March 26, 2017

CRPS & Life Update

Hi everyone!

Out of bed and doing great


CRPS UPDATE:

My set of medications (click here to see what I'm taking) are still doing their job. I'm having less nerve pain than I have had in the last 3 years and it has been wonderful! I've dropped the Memantine but am still taking the others.

I've been able to walk around more and get to the store a few times a week. I'm driving a few miles and it has opened up so much. I'm still eating healthy (fruit, veggies, seeds & nuts). I dropped the chicken and so I'm eating vegan right now. I really need to find a replacement to chicken that will keep me full. Any ideas? I'm thinking about volcano rice.

My next CRPS doctor appointment isn't until JUNE! I will need to get some blood work before then but that is still pretty darn amazing.

The anxiety and panic attacks have gotten better. I started having issues after Ketamine 14 months ago but it has gotten easier over time. I'm doing great during the day and seem to only have issues at night.

My side effects from the medication are stomach issues, feeling winded & dizzy, exhaustion and my mouth and lips still being really dry & cracked. However, a humidifier and some other things people have suggested have helped with my dry eye sockets & sinuses so that is a wonderful thing.

I'll be staying on these meds for at least another few months and then we may choose to decrease a few and see if the nerve pain comes back.

I have permanent nerve damage in my right toes but I've gotten use to the numbness and it doesn't hurt.

LIFE UPDATE:
My husband & I are still loving Florida. It has been fun to get out more and enjoy the state from outside my bedroom. We went to the beach last week and we should be able to swim in the Gulf in about a month or so. It is regularly in the high 70s/low 80s and I'm excited for the humidity that summer brings.

It is amazing how much better life is when you aren't in pain.

My husband & I have been walking and have walked a mile three times. It still creates pain that puts me down for a day or so but it is a clunkier kind of pain that doesn't shoot fire through my nerves so as long as I stay off my legs, I'm okay. I'm gaining muscle mass again and have put on some weight. All great stuff.

My blood feels like it is carrying more oxygen to my limbs and feels like it is flowing better. Some days it feels a little too thin and I'm wiped and I get winded super easy so we (the doctor & I) are still playing with the Pentoxifylline. I really feel like this medication out of all of them is working the best.

Compared to where I was last year, the improvement has been amazing. Life changing.

Thank you for all the thoughts, prayers & encouragement!





13 comments:

  1. I'm so happy for you. I have been checking your blog for updates and am glad to hear your life is going well.

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  2. Wow Mellissa Rose!!! This is all good news! I read your blog when you used to sell sell sell on eBay. I continued to check in as you settled in to your new Florida home. You have certain had your ups and downs but have kept a positive attitude through it all. I can only imagine the pain you've been through. And your saint of a husband - what a great guy! You are so brave and I admire your courage.

    I'm happy that you continue to blog (even though you are in pain) and that you post what is working for you. I hope it helps someone else.

    I hope you and your doctors have continued success as you tweak your meds. Happy Spring!

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    1. Thanks Ree Cee! How sweet of you. And I agree - I have a fantastic husband. Thanks for reading allllll these years :) Happy Spring to you as well!

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  3. So happy to read this, glad you are doing alittle better. You are to young not to be able to enjoy your life.
    Donna, NY

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  4. It makes my heart happy to read this! You've connected people & saved mine/their lives with your blog. I will be forever grateful!

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    1. Thank you so much! :) It is wonderful to be doing better!

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  5. Hi Mellisa, I am so glad you are doing much better! I was just diagnosed with CRPS I and started reading and educating myself. I just finished Chris Allen's book. Very good starting point and very educational. My pain is not so severe so my doctor is starting me on pregabalin (Lyrica) and low dose naltrexone and 5g of vitamin C (he said that study show great results with high doses of vit C). Any thoughts on that? I am also adding all the supplements recommended by Chris and looking into the neridronate treatment options in Italy. Can you please share Chris Allen contact email address? Thanks a lot for starting this blog! So helpful and encouraging. Hope you continue to feel better!!!

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    1. Hi Emi! I'm so sorry you were also diagnosed with CRPS!

      I have heard that Vitamin C is good for people with CRPS, especially if you are going to have any kind of surgery (dental surgery, etc). I'm not a specialist or doctor by any means so I don't have any info about Vit. C past that though. I do take a lot of supplements/vitamins as I know my diet is lacking in a few things. I eat mostly fruit, veggies, nuts & seeds.

      I found Chris Allen's email on one of his YouTube videos so here it is: crps.survival.guide@gmail.com. I have Skyped with him (his hourly rate is $100).

      Thank you for the kind words on my blog. I have continued to have less nerve pain which is awesome. :)

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  6. Melissa I am an happy to hear that things are improving for you. Your story surely made Eva me. Moving for your health is a bold move and I applaud you!

    I have been interacting on your blog for some time both sharing my story and replying to posts of others sharing the CRPS journey here. I see you have commented/acknowledged everyone else's posts but mine which makes me wonder if my posts are, for some reason not visible to you. In any case I want to thank you for providing this resource.

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    1. Laurel! Thank you for allll you do in these comments! You are helping others and that matters so thank you so much!

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  7. I did not see the typo where I was trying to say that your story surely impacted me. I have no idea why it came out the way it did!

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    1. Your typo made me laugh. Auto correct, huh? :)

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Thanks for commenting!