Hi Andrea

You've had some fab advice here, so I just wanted to sys that yep, me too lol! With CRPS comes emotional and physical stress, hand in hand...it's exhausting.

(This started short, and then I got carried away. Sorry!!!)

I think it is particularly a problem in the first few months after diagnosis. I went through hell emotionally, and with time between that period and now, I can see that I was in shock. Being told you have a diagnosis is initially a relief - at last you know what it is, and you feel more hopeful. But the problem is that very quickly you realise that it doesn't change the day to day worst thing of all - the pain. It's still there. Pain management and pacing becomes a big deal, trying to find ways to still do the things you need to, but without making that pain any worse. It's a hard lesson to learn, and takes a long time.

You are also grieving. We all lose things as part of this, even the strongest of us. We can lose independence, freedom, being adventurous, enjoying new things. Work too, and work is a major part of all our lives, whether we can still do it or not. We become more scared of new situations, and we hate that. We worry more about doing things, and have to think ahead before doing the things we used to just run out of the door to do... It's tiring and sobering, and it drags you down.

Plus let's not forget the fact that nobody really understands this . From doctors to nurses to your own family and friends, people don't know about CRPS. They haven't heard of it. They think pain is a headache or a bad back, not what you are going through. It sounds incredible to them. People's initial sympathy can wane, friends can become distant, family forget to ask you how you are today... It's cruel and isolating. Hard not to feel bad about that kind of thing.

Guilt as well. Oh the guilt. There's whole threads on this site about guilt. We all feel it, even though we didn't ask for this, we don't enjoy the changes it makes in us, and we certainly wish it hadn't happened!

The problem is that everything takes time - doctors appointments, getting meds, getting to see a specialist, seeing a physio. And the medical profession works in weeks....6 weeks before you see this person, 2 weeks to see that one, 3 days to wait for your meds, etc, etc. But when you are in pain, every minute is a long time, and a week of pain takes a lot out of you to just get through it.

The result of all this is frustration and anger, and it's perfectly understandable. It is a grieving process, and you go through the stages of grief just the same. But because you are fighting to keep your life as it was, and not to let things affect you too much, you are struggling on. It's a good thing to do that - giving in and giving up is not an option! But of course all those emotions are still there...and they have to come out.

So your emotional turmoil at the moment is, in my really not as humble as it should be opinion completely normal for someone recently diagnosed with something as horrible, as misunderstood and as life-altering as this. Give yourself a bit of a break here, and trust in yourself that this will get easier to handle. You will find ways of coping with things, including your emotions. CRPS does indeed mess with your brain in a biological way that you can't change, but you do adjust to what is happening to you, and just find your feet again

If things get really bleak, or you feel you need some extra help, go to your doc and tell them you need to see a counsellor or psychologist, to talk about how you feel and how this is affecting you. I see a counsellor monthly at the moment, privately and off my own back, and it's great just to talk about how I feel, and have someone tell me I'm doing ok. I also do meditation exercises at home, and practice deep breathing exercises to gain control when I feel stressed. It all helps just a little bit...

Take care of yourself, and good luck with everything. I hope things settle down for you soon. Sorry about my all too usual wordiness

Bram

Also, don't forget to get your thyroid checked. If it's off it can cause emotional havoc. Sometimes when our body is under a lot of stress or dealt with a giant injury the thyroid goes off balance.

Thank you Bram,

That gave me a lot to think about. I know that I'm having a hard time not talking endlessly about what's going on with me to anyone who gives me an opportunity and that has me feeling really awkward and embarrassed too. The grieving is part to be sure as my CRPS started with a left thumb injury and I've spent the better part of the last 23 years as a massage therapist working primarily in rehab/personal injury clinics. I don't know enough yet but my instincts tell me that part of my life is over because I can't ever see putting using my left hand in the same way without fear of re-injury. It's already spread up to my elbow in a very short time.

I can see how blessed I am at the same time. My primary physician is so caring and thorough and stands by me and my new PM/rehab doc is very knowledgeable and actually kind of funny, (which helps!). She compared the effect CRPS has on my memory and comprehension to that of having a small child tugging or pulling on me screaming, "Mom!, Mom!, Mom!" every half second day in and out. I cracked up! First good laugh in a while! The physical sensation is different but the near relentless distraction and wearing down of personal fortitude made it a pretty good analogy for me.

That's a very interesting point. My husband and I have a roommate who is a TCM (Traditional Chinese Medicine) practitioner. Maybe he can offer some insight and suggestions into supporting my thyroid until my next doctor's appointment.

Hi Andrea,

Don't dispair about having moods around RSD/CRPS! Give yourself time to sort it out, and be gentle around judging yourself. My RSD began when I was a teenager with a DVT in my arm. I was recovering when i friend hit me in the arm...and my oddysea began. I had multiple types of treatments and surgeries ...(for later) and I suffered a lot of depression- especially after a bier block with risirpine,but the point is that in that process:

I discovered that we are far greater than our pain;it is a gift to be able to feel it and know that in caring for ourselves we find true compassion for each other on this planet, and with that can share here...and not being alone.

I may not speak well( because of a TBI) but please know you are in my thoughts and prayers... caring that you can find relief for pain and peace with your beast.

Extend that same thinking to the effects chronic pain, excruciating at times, has on our emotional states.

Don't forget about the stress of poor sleep quality. A human brain just can't functional optimally without sufficient GOOD sleep, which is so hard to achieve with chronic pain.