Need to chat about CRPS please
 

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

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 :hug:

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

Halp
 

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!!

Hi again...
 

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!!!

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 :hug:

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?

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.

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.

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.

Man, I feel for you, it is scary. As Iam sure it isn't good for me but I still refuse to let myself believe it. Which is probably why I'm currently sitting here in complete shock that I can't draw anymore (its in my right hand and wrist and moving up my arm) and on the verge of tears....I think it's sinking in. Anyways I've fou d this place such a blessing. It's so important ( in my opinion) to have people to talk to and ask questions. I always do. Then go away feeling better! There aren't many people I find in my daily life who have even a clue what crps/rsd is let alone finding someone local who has it.
Good to meet you! And I know you will find what you are looking for here!

That makes sense. Okay I'll give it another shot. I'll see about getting pm near my neuro . my rheumatologist is in opposite direction. Trying to get em all in a single location. I'm just worried I may have cancer. I get so tired doing the easiest of things, I.e. folding laundry or limping from one room to the next. It's summer now, so I'm gonna try the pool as often as I can. I was going to pt for my foot and back, but it was a 45 min drive. I'm hoping the pool will help with all that. Do you happen to know much about photobia?

Hello there!! I too am still in denial. Am hoping neuro can find something wrong so they can treat it, but on other hand don't find anything cuz it could be worse. I look forward to chatting with you.

hi chris
 

Hi Chris, welcome to the club. Sorry to hear you are having a terrible time right now. I've had crps type 2 for 5 years. Your story sounds alot like my own experience. It started in my right leg. Its from lumbar spinal nerve damage after lumbar surgery 2 lower discs removed, blah blah blah. Anyway, my right foot n ankle swelled, turned red purple , searing pain just like alot of folks experienced. Couldnt sit down without it turning purple, could stand either. Right side abdominal pain, hip pain, all the way to my foot. Went on to develop sensitivity to bright sunlight (need sunglasses all thetime now), then digestive issues- acid reflux n irritable syndrome, dizziness when i go from lying down to standing, anxiety, muscle twitching spasms, cramps, and buzzing all day n night, then to top it all off, i get hypothyroidism, b-12 deficiency, and calcium deficiency. Seemed like a huge windfall of problems and i never had health problems before. I saw all different specialists for each individual thing. It wasnt until i saw a rheumatologist 8 months ago that told me all these things were linked to something called CRPS, and i have fibromyalgia too! The rheumy referrd me back to my primary care doctor. I guess ive finally gotten to where i want to see what other types of treatment is available. This crps has spread to involve both legs and my arms and my strength n stamina afe severely impacted. I just thought i would share my storywith you. It was very scary when all these things kept cropping up not knowing why or how. At least now i understand and i think this has stabilized for the time being. Hope my story helps.

I don't k ow much about photophobia, but I can tell you hot sun brings the pain all the way up to my shoulder. I am a redhead and the sun already is not a friend to my skin but since this started, soending too much time bare skinned in that arm is very painful.
I recently started massage and it's taken a bit to not have that overwhelming nerve response to touch calm down enough to allow it. Now I enjoy it. (But one stelate ganglion block really helped that for the first one, now it's wearing off) I also use my horse to rub my arm on for desensitizing in a way that also brings me great joy and positive feedback and it's very helpful. Do you have a pet that you may be able to pet with your foot when you are in a time you are feeling peaceful and relaxed?

I get worn out too easily also. I checked and no cancer. Just my CRPS affecting my lungs making the simplest of activity to make me get tired quickly. The only thing I seem to do luckily is playing piano. One handed of course...

Here's a heeling hug for all... :hug:

Omg!! That sounds exactly like me to the T. I honestly believe mine started in 2009 or 2010 when I tore the ligament in my ankle for the 2nd time and sprained my lower back both while playing basketball. It just got real bad from hitting my foot on vacation last year.

Did the Dr let u know it was spreading internally or just u know it did? For me I know it is. Everybody think I'm a hypochondriac but I know I'm not. Also, did u get written paper stating u had CRPS?

I know what u mean Russell. It's getting to that point for me. Know anything about the lump feeling? Gets worse when I keep my head down. Starting to feel more and more light the more work I do. I get light headed if I have to bend over and stand back up too. When I was younger, in my teens, I would ride coasters and pass out when going upside down. Anytime I went upside down I'd pass out or maybe it was blackout.

Have you had an MRI of your brain and neck? The reason I ask is some of you symptoms sound like Chiari Malformation. Blackouts, numbness and tingling, difficulty swallowing. I would check with a neurologist. Personally, I know I feel better when I have a diagnosis. Unfortunately sometimes more than one condition is needed to cover all symptoms.

No matter what happens the support here is better than any I have ever experienced. The people here are often more educated in CRPS than many healthcare professionals. I am lucky enough to have a very supportive family but they don't really understand. However having people who are going through what you deal with everyday is invaluable.:grouphug:

That is so very true. I just actually talked to my family about some things I was going through, and they think it is just anxiety/stress :/ I have had MRI done, and it was normal. Xrays confirmed at chiropractic office that I have stage 3 disdisc degeneration in my neck and lower back. Just made an appointment with my primary care dr. So I can see about getting set up with pm clinic here locally. In the mean time, I may try the 1% capsizin on my entire foot/ankle. I agree that this support is really awesome. I know it is helping me a ton.

I went thru years of thinking i had independent health problems that all started after spine surgery. When i saw the rheumatologist she assessed my constellation of health issues and with the results of the ncs/emg test of my legs she diagnosed me with crps type 2. Of course i immediately looked on the internet and found my symptoms lining up with her diagnosis. It all made sense. This thing has gone internal. Thats where the dizziness, digestive, thyroid, anxiety problems, vision problems came from. Glad to know. Eases the mind, really. My spine orthopedic may have thought i was crazy, the neurologist said i was still recovering from spine fusion surgery, another neuro surgeon suggested MS. I was like a ball in an arcade game getting bounce from dr to dr. I knew there was something wrong but none of them could see beyond their own specialty. My primary care dr sent me to the rheum who finally figured out the mystery. So yes its on paper now. I just need to find the right 'team' to fix me up. I,m glad im not crazy and dont have ms.

Thanks sounded a lot like my Dr. journey too. I went through 13 doctors before 2 of them agreed it was CRPS. My family thinks the light headedness and dizziness and shortness of breath is anxiety and stress related and that's all it is. I'm in agreeance with them to a certain point, but 90% of it is my CRPS I know for a fact. Was thinking the cymbalta was supposed to help with that, but not sure it is. Maybe the pm Dr. can help with that issue. It's gotten to a point where I feel like I have stood up too fast just from sitting in a normal chair. It's getting annoying :/ Headed to the ent tomorrow to get my "lumpy" throat and tight diaphragm checked out as well as get my allergy shot. I sure hope I can get something to help soon. Trying to work is becoming a hassle :(

Once i started taking cymbalta alot of my anxiety and depression went away. It became easier to cope with my health issues. Before i would get overwhelmed very easily when i tried to keep up with my responsibilities - work, family, cooking, cleaning. I was continually falling short in all areas and very upset that no matter how hard i tried, i could not do it. Cymbalta helps me keep calm and cope with moving at a slower pace. I've learned my physical limitations and literally cannot do what i used to do. Its frustrating and at times i get upset about what i have lost. I am slowly building a new life based on what i can do. Someone posted a link to a youtube presentation by dr pradeep chopra about crps. I reviewed it recently and you may find it really helpful in understanding just what crps is,how it affects people, goes internal in some cases, and treatment options. Might be worth checking out.

Okay I will definitely give it a look! I guess one of my biggest questions still is, how do you tell if it has spread internally? Is it the CRPS or am I sick with a virus? etc.

Dr. Chopra had two videos, the more recent one "CRPS Diagnosis and Management" is the one I am always recommending. It has a lot of helpful info on treatments, supplements, things to avoid and is non-doomsday.

On depression and anxiety. It is so important to recognize that these often go hand in hand with chronic pain and illness. Medications to manage these can be helpful when needed. Therapy can also be a tremendous help and sometimes negate the need for medications. Dealing with this illness and the losses that come with it is challenging. Get support. This is a lot to deal with on your own. I made the mistake of putting off going to counseling thinking I would be getting better and be fine. ultimately it made a huge difference in my well-being and ability to cope with pain and life changes.

I found my therapist on the Psychology Today website. She had a specialty in chronic pain and traumatic life change. It was a good fit and I did not need to try others, we got straight to work. She is certified in EMDR and hypnosis, two modalities that go around the conscious brain. I found these to be very helpful in addition to talk therapy. I went for 8-10 sessions and Wow was it worth it!
:grouphug:

[QUOTE=krmitdfrog;1150438]Okay I will definitely give it a look! I guess one of my biggest questions still is, how do you tell if it has spread internally? Is it the CRPS or am I sick with a virus? etc.[/QUOTE

How do you know if it has spread internally? Look for a document online called systemic complications of complex regional pain syndrome by robert schwartzman. It has some very interesting info. My advice, make a timeline, start with when you developed crps, how many maladies or health problems have cropped up since then? This document helped me connect the dots between crps and the new health issues that i now have. I never needed a prescription plan, now i complain my co-pays are to high and i keep my meds in a daily pill case because i cant remember whether i took them or not. Duh, brain fog, short term memory issues, and i,m not a senior citizen yet but i sure feel like one.

Okay that does help me a lot. Thanks! Btw, on the disability topic, do you have to be off work for a whole year still or just deemed unable to perform certain duties and can still work (what you can do) until it is finalized?

The joys of crps. Everyday is new. In the beginning docs thought I had tendinitis severe because I had painting n scraping for weeks, the pain was horrible in both arms and hands. Fire omg fire I slept in ice packs wrapped around my arms go fig. Well things got worse after ice n immobilizing arms n hands. Then came the dreaded day to do a nerve conduction test, I don't know how the dr survived, or myself, 6 months later I still had bruising haha. Long story short now almost year 4 from initial injury I'm still battling pain, swelling, fire feeling but cold to touch arms with the right arm n hand being the worst but now my feet hurt n swell n have for about 1.5 years. I'm not here often but if u want to share fb or cell numbers I'm game. Fb is heather dawn Roode and yes that was the first day I felt well enough to hold baby in right arm