[krmitdfrog]

To whomever will respond:

I need to be able to talk to someone who is also battling CRPS. I believe I have some things that are related to it, but am not sure and need a support to talk to. I have been diagnosed with it, just no one to talk to about it that has it. I feel it is getting worse and it is quite scary. I wouldn't mind texting or Facebook or just pm on here. I just need someone to talk to bout it all ASAP. So if anyone wouldn't mind, I'd appreciate it. I'd like to ask questions and comment on a daily basis.

Thanks in advance,
Chris

[Littlepaw]

Hi Chris,

It IS scarey going through this. There can be so many weird things that come up with this diagnosis and the way it impacts different systems. It can be difficult knowing what is what sometimes. Everyone struggles differently and everyone's presentation is unique. I think your best chance of getting a broad range of information in response to questions or comments is to put it right out here on the forum. So long as it's appropriate You have the best chance of getting what you need quickly and getting input from different people. For example, some people have color change, mine can be pretty dramatic, Others don't have it at all. Cast a wide net, maybe someone who has issues similar to yours will come up to PM with. In the meantime you get some support.

So many of us have days driven by treatments, appointments or general poopiness it might be hard for some to PM daily...

Sending hugs

[krmitdfrog]

Originally Posted by Littlepaw

Hi Chris,

It IS scarey going through this. There can be so many weird things that come up with this diagnosis and the way it impacts different systems. It can be difficult knowing what is what sometimes. Everyone struggles differently and everyone's presentation is unique. I think your best chance of getting a broad range of information in response to questions or comments is to put it right out here on the forum. So long as it's appropriate You have the best chance of getting what you need quickly and getting input from different people. For example, some people have color change, mine can be pretty dramatic, Others don't have it at all. Cast a wide net, maybe someone who has issues similar to yours will come up to PM with. In the meantime you get some support.

So many of us have days driven by treatments, appointments or general poopiness it might be hard for some to PM daily...

Sending hugs

Thank you kind sir!! I will definitely do that.

[krmitdfrog]

OK so here it goes. My rheumatologist has me taking carbamazpine to help me sleep and baclofen 3 times daily. I believe I need something more because the pain and headaches and muscle twitching are getting more frequent. He says this combination of baclofen, carbamazpine, and red pepper cream is proven to work. It may take 3 months or it may take years he says. I do not use the red pepper cream bc I cannot stand it.

I haven't been able to walk without a cane since July of 2014. (It's in my right foot/ankle). Recently, I have been trying to get around without it. For the most part, I can, but hurts like Hades. I can't stand for more then a minute, the cold air hurts me beyond belief,both my feet up to my calves get cold when I sit in a chair, my legs go numb when on the toilet when sitting up, back hurts when slouching on toilet.

I started having back problems about 5 years ago and it's just gotten worse. Here lately, it feels like my throat is closing up(in between my collar bone at the base of my neck). I just recently found out I am allergic to just about EVERYTHING and I mean EVERYTHING. My stomach has been burning so bad the PST few days I can't seem to do much of anything, except keep the toilet company. I am still trying to work, but just doing 5 mins of any kind of activity wears me out to the point of my co workers asking if I just ran a marathon.

My hips have been popping out of place for 3 years now, with just the slightest motion. I had shoulder surgery last year bc my right shoulder popped out of place and I tore my interior labram. I have noticed that I get real tired/exhausted feeling when the lights are too bright. It feels like I have a helmet pressing down on my head. I am not sure how long I can keep working, but my rheumatologist doesn't want me to do anything yet until I've been on this medicine longer. It's been 3 and half months.

I also take cymbalta at night time and singular with my carbamazpine. I take nuvigil bc I have narcolepsy as well. Have had Asthma since I was a young kid too.

I know this is a lot of information and it jumbled up, but I'd really like to talk with some of you about it.

And I know what ya men paw. This week, I barely have been able to do anything, other then just lay in bed and sleep. My wife is struggling real hard at home

Thanks all!!

[Russell]

Don't worry about all your info. It's always good to vent a little. It helps the battle we all face. Someone is always lending an ear.
Here's my story.
In 2007 I was involved in a really bad crash which completely snapped the left upper arm above the elbow. I also had a severe cut and blow to the head which caused me a lose of consciousness.
A CT scan found my cerebellum shrinking and the operation on my arm putting a rod from the shoulder to the elbow gave me this ugly monster.
The cerebellum controls balance, speech and other involuntary actions. So here I am in a wheelchair because I fall too much.
My speech is getting really slurred to the point that I'm hard to be understood.
My vision is blurred and I get seizures from time to time.
I had a bad fall once where the rod dislocated from my shoulder and is now sticking through my arm bone. The doctors tell me that surgery might worsen the CRPS. Another time I fell I broke my right wrist and now I have a plate in there holding it together. Also to fix the clawed left hand from CRPS I had it fused and there's a 4 inch plate there to make it look normal but it's useless.
Now all I do is take med cocktails and sit in this wheelchair.
Doing stuff around the house is difficult at times but needs to be done.
How's that for long!
Happy Dad's day if fitting!!!

[Littlepaw]

Hi again,

My first reaction reading your post is that it is always okay to get a second opinion. Rheumatology may or may not be the best specialty to treat you. Rheum is probably not the usual first line responder for CRPS patients and may not be as in the know about treatment options.

I don't think waiting years for a treatment to work is a reasonable option. 3.5 months of a med trial sounds like a good enough amount of time to know if something is going to work. Some meds requiring loading phase but you should be well past that by now. There are many combinations of meds to try for CRPS and everyone responds differently. Since there is no magic bullet it takes experimentation. I would encourage you to find a pain management doctor or neurologist who treats a lot of CRPs patients and is willing to work with you on finding the right cocktail for you.

On the cane - just use it if you need to! There is nothing wrong with needing a mobility aid. A cane is as minimal as it gets. If it helps your pain and therefore your overall health and function, by all means go ahead!

On the allergies. Consider an elimination diet to reduce irritants and get that part of your issue separated out from the rest. There are many common food irritants that may not be an actual allergen for you but still cause a problem. The nightshade family and dairy and wheat are common problem causers.

it may be worth asking a pharmacist if any meds you take have interactions.

Have you had a PT eval or treatment? Have you found exercise you can do comfortably? a bunch of us seem to practically live in the pool. It is a great place to walk and keep up motion when the ground is not forgiving enough.

Sending more hugs

[krmitdfrog]

Wow that I a lot!! I'm sorry you are having to go through all of that. It's a lot to deal with. I'm not sure when mine first started but Dr just diagnosed me recently.

Has anyone ever heard of capsazin and if so, what are the experiences with it?

[Littlepaw]

I have used capsaicin on my scar. It defunctionalizes vanilloid receptors in small fiber nerves preventing them from sending pain signals. Over time some of the defunctionalized receptors retract from the dermis and new receptors form over a period of weeks to months. I wonder sometimes if that might mean you can get new ones that act right! There are actually some decent studies on the use of capsaicin for pain and there is currently a high power 8% capsaicin pain patch called Quetenza that must be used in a doctor's office. It has been used with CRPS and diabetic neuropathy patients per literature. Forgive me if I explained poorly or got something wrong, it has been a while since I read those studies.

[krmitdfrog]

Well, this 5% cream that my wife will apply to myfoot/ankle. It feels to me it is deeper then nerves in my ankle/foot. I feel it in my calf as well. He said it will take 3 weeks to get used to. I tried it for 3 days but it hurt too much. But I'm in so much pain I'm gonna try it again. I canceled my pain clinic appointment thinking I may not need it. But I may reschedule at this point. All my joints are sore too. Mainly back and ankle/foot. Shoulder of course cuz I have a plastic bracket and rope holding it together. Thanks for the info and all. I check every 10 mins or so if I can.

[Littlepaw]

Even 1% can take getting used to. You will initially have heat sensitivity because those receptors sense temperature. Avoid putting your leg in hot water after application. Some of the nerves of the foot and ankle run up deep through the calf (as opposed to along side or in front of it). When they are really aggravated pain can shoot up further along the track of the posterior tibial nerve if its lower branches are affected. That was one of my original problems after a nerve injury caused a neuroma on an ankle nerve branch. My shooting pain stopped after the repair. Darn thing still hurts but not nearly so bad and it stays local. I know that isn't your issue. Just saying my experience of the funny things nerves do. Unfortunately I am little too familiar with different types of nerve pain!

Go ahead and see PM. it never hurts to get information and then you have someone on board when you are ready or when you need it.