I live in fear,worry,anxiety. I am seeing a psychiatrist,did biofeedback,group therapy,and am going back to individual therapy. I also sleep a max of a few hours at night and that is not a joke even on enough sleep meds for a horse.I can go a few days without any. I know people say that is not possible but I will be up talking to a friend,can tell you a movie I watched,on the computer,etc. I live in fear about my health and worry about everything from environment,air,knocking myself,I could go on. I think because not just with the rsd pain but other health problems that may be connected of course so much has happened. It starts off as a small health problem that seems like nothing to turn into a long lasting painful experience. How does one get past the fears and worry when so much happens? I guess just looking for others experience. Thanks for listening.

YES!! All the time...I totally understand how you feel. We never know when BAM! we are going get screwed with horrible pain because we did too much, the weather changes, etc. Its exhausting and unnerving.

There is a relaxation technique called "Mindfulness" that my psych taught me about. FMichael has also talked about it quite a bit, and I'm sure can provide a lot more info about it than I can. There are some really good books on the subject that can help and many areas have Mindfulness support groups. I used it all the time during my year out of work when I was the most vulnerable.

Perhaps you could send a PM to FMichael and ask him for more info...

Good luck...XOXO Sandy

I do live in worry, to an extent and it has gotten worse lately, along with my health. Yes, the seemingly little problems that turn into ongoing nightmares are really trying my patience and often I feel that because I have so many different specialists on my roster, each one feels that another is solving the problem. Yet, nothing gets done, the problems get worse and multiply. It's so frustrating when you are trying desperately to restart a life and to constantly have physical problems jump into your path, to have people expect you to buck up and move on and yet be told that you cannot pursue things until your health is better managed.
I've accepted that my CRPS will not improve and actively try to alleviate pain symptoms, while still trying to maintain clear thinking through medication use. It's the complications that scare me: infections, exterior ulcers from cold/poor circulation, gastrointestinal fiascos of all kinds. And it scares me that I cannot find a medication that modifies pain without making me feel like a complete moron. Because of all these things, I worry that my youth has been wasted, my education will never be used for anything but good dinner table conversation, and that I will never be able to find and function in an intellectually, emotionally and financially satisfactory career. And the threats to my personal life worry me so that I fear my friends and family will become even more apathetic as time wears on.
So yes, I have many fears now thanks to CRPS. But, I don't think about them in bed at night. I fantasize about a simple things I want to do (eg. shop through a market in Vietnam) and between that, my cheap and beloved sleep mask (get one!) and a change in sleep meds, I'm getting better sleep. Like you, I was only getting spots at a time.

I've also started focusing pro-actively on my health, looking up nutrition, alternative meds etc. instead of constantly reading about CRPS and my other conditions. Spending more online time doing fun things like watching videos, emailing/messaging about non-health related issues and doing research on various topics of interest. The latter gives me better things to think about and perspective. I also switched my nighttime tv viewing to (mostly) comedic shows, skipping the crime and medical dramas.

I hope you take some comfort in knowing you are not alone, and find ways to help yourself de-stress.

Hi daniella,

Excuse me for butting in; I happened to see this thread title while going down the list of boards. I haven't been getting much sleep myself lately (intractable pain) - averaging 2-3 hrs. a night for the past few weeks, and ocassionally a couple sleepless nights in a row (except that I'm not on any sleep meds). What you're describing - pain - sleeplessness - anxiety - depression - is well-known/documented as the vicious cycle. This brand of worry even has its own term - Catastrophizing:
http://www.health.com/health/conditi...188528,00.html
http://www.nutritional-supplements-h...-insomnia.html
Others - Google: "vicious cycle" "chronic pain" insomnia anxiety

It's exacerbating your health in a lot of ways you may or may not be aware of - It's gotta stop. Easier said than done? Indubitably. There are facets you cannot control (or cannot contol easily) and there are facets you can control, and it's on these that you should focus. Help is out there, whether from your therapist, support group, support network, or out on the web. Help, yes, but no-one can do it for you - you must do it for yourself and for those who care about you. I can't tell you exactly what to do or what will work for you; I can tell you what usually works for me:
http://tinyurl.com/2c642oa

whereisfunkytown also has some excellent ideas/advice.

HTH,

Doc

There is a lot of excellent advice here. I do reasonably well following it except for being able to supress the guilt of not contributing more than I do and in being able to laugh more. For a long time I was even snippy with people and this made laughter much more improbable. It can be hard to be in pain and socialize normally especially if you never did a lot of socializing in the first place.

The terror of this disease is just pervasive. There's always the thought in the back of your mind that you didn't really do anything to get here and the slightest slip can cause symptoms to worsen horribly and even permanently.

But we do have to get out there and do as much as humanly possible and stay as active as we can or we'll atrophy away much faster. For me this requires that I find things I enjoy and continue to do the things that I always enjoyed even if I can't do them well. Hobbies are critical even if it's just reading. If holding a book is hard then read books on the net. As the person in the link said; modify. Make the adjustments necessary to continue to lead as normal a life as possible.

For me this is mostly about trying not to dwell on the dangers. Being as careful as possible tends to help this a little.

Learn your triggers and avoid stress.

Thank you so much for your replies though I am sorry that people can relate. It helps to feel less alone. First I do notice that when I have "better" days that are consistent the worry does lessen. Now though with pain being so high again,lack of sleep,and some personal issues worry is so high.

Sandy thank you for that suggestion. I will look into that. I have done CBT and then like I said biofeedback. I do know that I have learned many tools in my over 14 years of therapy but using them is a different story. I will look into an inperson group. I know those benefit me more then individual therapy.

whereisfunkytown I can relate to everything you feel. I am sorry. If you want a pm friend I am here. I try to stay in the day but it is hard as you know. The rsd impacts every single thing. I also don't have proper pain control. My rsd doctors don't believe in narcotic meds so when my pain gets to the insane point I feel so scared because I almost feel I won't make it from the pain. I like your idea of being proactive. I was trying that for awhile with better eating etc but sort of fell of the wagon.

Dr Smith you are not butting in. I appreciate your feedback. I do know the worry is making my pain worse and why I did the biofeedback. At the time I could bring myself to a calmer place but in daily life not. I will look at those links too.

I do see that the way I am currently living is not right even for someone in chronic pain and health problems. I am beyond anxious,my mood is everywhere,I make very poor life choices I also am way too isolated. I live by myself,my family is far away,I don't work due to rsd etc. I think it is making things harder. Anyhow again thank you for your help

Proactive? Look into "Low Dose Naltrexone" and bring it up with your rsd doctors.
Google: crps "low dose naltrexone"

Doc

RNC you know when I took part at Cleveland Clinic pain program they did not allow us to talk about our pain in terms of how it felt physically. They said it just made the brain process it more. Now on a day to day basis I always talk about it with my mom. It is not good you are right and I am going to work on that suggestion. You know I was thinking of a dog. Now my mom though I live on my own would not be happy since I am not a dog person and why my pup I got which granted was 13 years ago lives with her. I feel so alone though so maybe I was thinking to try a foster situation first? I am glad yours brings you comfort.
Dr S I will look at that as well

Thank you again.

I choose.
To be worried, or to be happy and what? Free?

Yea.

I have no reason to worry, BIG DEAL, I got rsd, four discs, TOS, and more but I won't go on, I must say though , that all these give me reason to LOOK AHEAD! AND BE POSITIVE!

While I won't lie, I cannot do so everyday. Today, however is one I can!
Yesterday, was not, I was face down, but, still looking forward to a 'New Day' a 'New Life"~!

WE can't get down on ourselves because of pain.
We're not broken,
We're Beautifully Broken!

So MANY have it worse.

When my Dr or his nurses ask me about my worse pain, my least pain, or my everyday pain,
I can only say this.
Lowest, about 4.
Medial, about 7.
Highest, (and they tell me, on a scale from one to ten, many tell them much Higher than 10! I think, how can anyone be so uncaring? Always, someone has it MUCH WORSE than us! I give them a 9.5)
I'm , after 27 years of this, and other things, have difficulty thinking anyone with only rsd, could be SO selfish, even after seeing the suffering on TV, that they could rate themselves a 10+!

I don't know, who do they think they are, but I'd suggest, that they count their blessings!
That's what I try to do.
Even at my lowest.

Get out and help a church/synagogue/charity!!!!!

You'll feel SO much better about yourself!

Oh well, some will never get it.

Peace on all,
w/love,

Pete

SO natural to feel lost, scared, fearful, sad... as natural as brushing our teeth each day.. We have new normal..one we have not choosen for ourselves.. No practice runs here!!! As much work as it is to keep our spirits high eachday..we must also reserve much energy to continue to fight..manage our day or future its a hard thing knowing we haven't a solution for our disease and management of it is where we must pour our focus... Reach for the lighter side of our new life..stay hopeful inspite of our odds..as thru prayers and the kinder easier simplier parts of life are now essential... take time to smell the beautiful flowers and fight the saddness..so not easy but it is so important to our longevity...we are blessed to turn to our family here..a place you can scream and be yourself..we all understand the devestation of the pain of our RSD...bless you all!!!

Hugz to all...

Kathy