Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 11-12-2015, 04:27 AM #1
megsmountain megsmountain is offline
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Default Help please, need support :)

Hello all, I am new here. I am experiencing a major setback in my CRPS (major exacerbation in symptoms and now not only my hands have issues, but also my feet) after quite a fall of over 6 feet, dumb!! I'll never do it again, but was so worried about my sick cat under our porch I wasn't thinking!!! I guess I would like some support. I don't want to discuss the details, but also had some very bad news from an MRI last week, I've been one or another's doctors appointments daily. I'm trying to stay positive, the outlook keeps getting bleaker. I have actually been trying to help random people online to distract myself along with watching comedies, etc. as I can't focus enough to read right now or do anything productive for that matter. Any help any suggestions would be appreciated. I am barely functioning. Luckily, my most recent hospital appointment was right next to a great outdoor mall, so I at least bought some cute clothes to enhance my self esteem. I'm usually pretty resistant to all the pain and new troubles that pop up. This has really gotten to me and I am straight out not right. I don't want to give details, some of it is exacerbation of CRPS, some is not. It's just not good. Please, any good thoughts sent my way are appreciated. I know you all don't know me, but I am really having a rough time (that's a nice way of putting it ). Please offer me (or others) encouragement. I've shed enough tears lately for a decade. Thanks for any support
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Old 11-12-2015, 05:03 AM #2
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Meg,

I am sorry that you are going through a tough time, but with your positive attitude you will survive it.

When was at the ER for extreme pain and a nasty reaction to powerful antibiotics I was given a CT, followed by a contrast CT which revealed nothing about my muscle skeletal pain that prevented me from walking, but there was a devastating finding-an incidental brain aneurysm, big enough in size to freeze me into stone, because it requires surgery. I couldn't talk about it, or make a rational decision about it then, because I had too much to deal with as it was. Now it is on my medical bucket list.

Watching documentaries, tv series and comedies helped to distract me when I could not think through the crush of pain and the fog of worry. I know exactly what it is like not being able to read, but we are fortunate http://www.medicaldaily.com/therapeu...e-356280enough to live in an age when we have other media to distract us. Watch or listen to meditative programs. YouTube has them. There are apps for tablets and phones, too.

Music!

Try Zentangle or get an adult coloring book, supposedly this helps repair the brain.


I was not good at self-care as in manicures, pedicures, hair, make up, etc. I think if I had someone to assist me with this, it would have helped me. The most I could manage myself was dry shampoo and a comb.

Looking good gives you a lift-so those cute clothes you bought were brilliant.

I once read that every time you look in the mirror you should say something nice about yourself.

Knitting and crocheting are almost meditative hobbies.

Self-massage is beneficial, too, especially with aromatic oils.

Keep yourself hydrated-make your own electrolyte drink.

Use supplements -stress and worry deplete vital nutrients.

If you can afford flowers, have fresh ones.

Also I found gelatin helped me-it has amino acids and protein.

Don't forget your bowels-I found Chia gel very helpful.
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Old 11-12-2015, 05:22 AM #3
megsmountain megsmountain is offline
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Quote:
Originally Posted by BioBased View Post
Meg,

I am sorry that you are going through a tough time, but with your positive attitude you will survive it.

When was at the ER for extreme pain and a nasty reaction to powerful antibiotics I was given a CT, followed by a contrast CT which revealed nothing about my muscle skeletal pain that prevented me from walking, but there was a devastating finding-an incidental brain aneurysm, big enough in size to freeze me into stone, because it requires surgery. I couldn't talk about it, or make a rational decision about it then, because I had too much to deal with as it was. Now it is on my medical bucket list.

Watching documentaries, tv series and comedies helped to distract me when I could not think through the crush of pain and the fog of worry. I know exactly what it is like not being able to read, but we are fortunate http://www.medicaldaily.com/therapeu...e-356280enough to live in an age when we have other media to distract us. Watch or listen to meditative programs. YouTube has them. There are apps for tablets and phones, too.

Music!

Try Zentangle or get an adult coloring book, supposedly this helps repair the brain.


I was not good at self-care as in manicures, pedicures, hair, make up, etc. I think if I had someone to assist me with this, it would have helped me. The most I could manage myself was dry shampoo and a comb.

Looking good gives you a lift-so those cute clothes you bought were brilliant.

I once read that every time you look in the mirror you should say something nice about yourself.

Knitting and crocheting are almost meditative hobbies.

Self-massage is beneficial, too, especially with aromatic oils.

Keep yourself hydrated-make your own electrolyte drink.

Use supplements -stress and worry deplete vital nutrients.

If you can afford flowers, have fresh ones.

Also I found gelatin helped me-it has amino acids and protein.

Don't forget your bowels-I found Chia gel very helpful.
Hi Biobased, I'm so sorry to hear about the brain aneurysm. Mine is a possible cancer scare. I wish I could do more "self beauty" treatments for myself, but my hands are the affected area. I'm lucky if any of my nails are the same length, lol! I try, it just has never worked out. I either try and look good or I take a shower and cook??! Maybe, sometimes. So, clothes help, as I don't have to do anything with my hands except try them on and pay the bill If I could just afford those personal chef's and whatnot People think I look "put together" as I am fairly young and they scowl at me when my hands shake signing the receipts, etc. They think something else of me and I don't like it. I have thought about printing out a shirt that just explains it, so I don't have to advocate. I have some other major medical issues that I advocate for, maybe we need to band together and advocate. No one, even nurses, dr's etc. even know what I'm talking about when I mention CRPS. I have to always say RSD as well and oftentimes give a definition. We need to get together to raise awareness. Not on the negatives though!!! Just on the disorder. Stay positive. I'm sorry you are going through/have gone through so much. I'm what most of my friends would call an "empathetic" person. I really do care. Take care of yourself and hopefully this "cancer issue" is a non issue. Praying for the best
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Old 11-12-2015, 05:27 AM #4
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Originally Posted by megsmountain View Post


Hi Biobased, I'm so sorry to hear about the brain aneurysm. Mine is a possible cancer scare. I wish I could do more "self beauty" treatments for myself, but my hands are the affected area. I'm lucky if any of my nails are the same length, lol! I try, it just has never worked out. I either try and look good or I take a shower and cook??! Maybe, sometimes. So, clothes help, as I don't have to do anything with my hands except try them on and pay the bill If I could just afford those personal chef's and whatnot People think I look "put together" as I am fairly young and they scowl at me when my hands shake signing the receipts, etc. They think something else of me and I don't like it. I have thought about printing out a shirt that just explains it, so I don't have to advocate. I have some other major medical issues that I advocate for, maybe we need to band together and advocate. No one, even nurses, dr's etc. even know what I'm talking about when I mention CRPS. I have to always say RSD as well and oftentimes give a definition. We need to get together to raise awareness. Not on the negatives though!!! Just on the disorder. Stay positive. I'm sorry you are going through/have gone through so much. I'm what most of my friends would call an "empathetic" person. I really do care. Take care of yourself and hopefully this "cancer issue" is a non issue. Praying for the best
What is this about the gelatin? I am a veg head (vegetarian for over 20 years), except for fish oil and recently wild sockeye salmon from Alaska, does that help???
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Old 11-12-2015, 08:07 AM #5
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Yes, taking a fish oil and eating salmon is great for you. My sister's colleague, a famous doctor, recommends cod liver oil.

My sister, who has cancer, started taking supplements, using certain oils internally and externally, along with ingesting gelatin 2x a days about 6 months ago, she looks amazing. Her tumors have shrunk, too. The aforementioned doctor wanted to know exactly what my sister was doing, because the change in her appearance was so pronounced from the last time he saw her.

We got started on the gelatin when I recalled that our very young looking, but very old mother, used it every day for years. She also smeared herself with vaseline, which I would not recommend, because it is a petroleum based product. We think that the gelatin contributed to her good health, despite getting Parkinson's (maybe the Vaseline caused this, who knows) she was otherwise remarkably healthy- low blood pressure, low heart rate. She had beautiful skin-probably from the gelatin-collagen and sealing in moisture with the petroleum jelly. She was also a big water drinker.

She also ate healthy long before it was a trend- multiple colorful vegetables always, small meat portions, one small glass of red wine at lunch, never smoked.
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Old 11-12-2015, 09:46 AM #6
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Wish I could help. Im diving fast...as in full body RSD. My upper half of body is covered in fire. I am looking for help, just like you. I just dont know what to do. Sit here and wait for the rest of my body to be taken over? I'm sorry, Im no help. But I will listen to you vent!
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Old 11-12-2015, 09:50 AM #7
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hi meg. i am so sorry you are suffering so much and am sending many prayers your way.
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Old 11-12-2015, 11:49 AM #8
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Hi Meg,

I am so glad you reached out. We are here for you. I can't type much right now as I am headed out the door but I am sending healing thoughts.

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Old 11-12-2015, 06:40 PM #9
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Hi meg,

Comedies are a great distraction, as are many of the kid's shows which have adult jokes hidden throughout. Anything that switches the mind off from the mundane and depressing realities of the World in general.

The exception for me, as you have found, is using what positive energy you have to try to help others on Forums. It is why I come here and why I have just joined PC.

I understand the mental turmoil of Cancer diagnoses, I have had 2 rare tumours myself and am now in the position where there is 'something' wrong with my liver or pancreas. I am just waiting for a CT Scan, having had to postpone one due to appt clash. I feel that if I can beat Cancer twice, then anyone has a great chance of coming out clear.

I do hope your Dr's appts slow down soon and you get to wear your cute clothes for other reasons.

Dave.
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Old 11-12-2015, 07:33 PM #10
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Hi again Meg,

I am sorry to hear you are having to deal with more than CRPS. I always think that ought to be enough already! It's hard when you have already had to strike a precarious balance to get through your days and getting bad news on an MRI is never, ever fun. I hope the finding is something that will heal with time.

I second Dave on the comedies. During my era of the most intense pain and worry, I watched movies I would not normally enjoy. Intense action and highly inappropriate yet hilarious ones like "The Interview". Normally I go for independent/foreign/art. But it seemed that the less cerebral films absorbed my attention better and obviously required less thought.

I also played some video games during that time (my son found this highly entertaining). Again, something I never do. Try different things, you never know what's going to grab your focus away your burdens. The goal is re-focusing your mind so if it's not a "productive" activity that's okay.

Keep in touch and let us know how you are...It is great to support others here but we all need a little help sometimes. I am glad you felt comfortable asking. Be gentle with yourself. Crying is so exhausting. I hope you are able to get good rest and maybe some yummy takeout so you feel pampered this week.

sending prayers for healing and gentle hugs,
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