Wasn't sure where else to put this, as it's a bit of a downer, and as you know, I do try to stay chirpy and positive most of the time.....most...

The last week or so has seen some significant increase in spread for me, to quite a shocking degree. I'm feeling very down right now.

The CRPS in my left side had got to a definite line I could almost draw at the base of my neck about an inch above my clavicle. The last two days I have felt it creeping up my neck to just below my ear. The classics are all there now, the sudden sharp stabbing pains, the odd aches, the sensitivity, the stiffness.

My right hand has suddenly joined in, and I saw my pain doc the other day and had that confirmed. It's been so sudden I can't get my head around it. I'm struggling to know which hand to try to use for things like cooking and opening doors etc. it's mainly my knuckles, but also my finger pads (typing this is not fun).

In my left leg, it had reached the top of my thigh, but has now crept round to my left buttock and right round my hip. My hip joint is painful every day all of a sudden. Everything round there is scratchy sensitive and sore. It's also reaching up the left side of my back to join...

...my upper arm and shoulder area has now enlarged to include my underarm area, my upper left side round to my upper back, and my left breast. I've had quite a few more of the chest pain symptoms, mainly the sharp pains in my breast. They make me gasp and stop. I know it's not my heart in a clinical sense, but of course being in my chest it frightens me. My left breast is now out of bounds , it's just too sensitive, and not in a good way. Poor husband.

I'm generally feeling crappy. I've had some sharp abdominal pains at times, my left heel is suddenly more painful, my foot pains have intensified, I ache all over and I've found myself wondering how many more walks with the family I've actually got in me.

I know it's winter, it's cold and damp, it's a stressful time, etc. I've been trying to stay positive, relaxed and occupied, but I've got no energy, and I'm in a patch of wanting to sit and cry at times. I think seeing my pain doc the other day didn't help really, because although she is lovely, I always come out feeling a bit desperate because I seem to have so few options, and there's not much but opiates as a pain relief option. I can't do that yet, once I do I won't be able to do my job.

There's always a bright spot She thinks she has got me into an IVIg study that I asked about months ago, so that's positive, and hopefully even if nothing comes of that, I'll maybe get access to other trials and treatments.

I just feel I've lurched ahead a few years in the space of a week. It's scary and depressing. The pain is so much higher, and of course just when I need to do things and get about. Typical.

Sorry to drop this on you guys, but I just need a small pep talk...

Bram

Bram, I'm so sorry. I am still on my way home from work and not much good on this touchscreen. I will message you when I get home.

Take care.

Kim

I'm sorry to here it spread, bram. What I found interesting about my treatment was that I got to deal with all of the ups and downs of rsd/crps. An example is when it spread to my knees. It stayed for 4 days, but I kept on with my daily routine, and it went away. As soon as it spreads more, do MORE. Fight it.
---Blake

Hi Bram! I am so sorry you are having so much spread and the difficulties that go along with it. Unfortunately, I understand and can relate to what you are experiencing. Know that you are not alone in this. I have been having the same struggles lately, which is why I haven't posted quite as much on here lately. I have had pain lately worse than I have in a very long time. This weather certainly doesn't help at all!

It is great news that your doctor may be getting you into that IVIg study...keep us posted on that! I hope she can get you in soon and that you will respond well to it.

I do not have any magic words to say to pep you up, just that we are all here for you to offer support and an ear to listen. I get it.

Oh, and never apologize for "dropping something like this on us"...it is what this place is for

Take care,
Nanc

Hugs Bram. I'm so very sorry to hear what you have been going through. When mine spread to my upper body I tried to deny it for a long time...hoping it was something else...anything else. But we know...deep down we know that CRPS pain from other kinds of pain.

Hopefully the IVIG helps...I am very happy to hear that you got in.

You take care of you and know that we are always here for you in both good times and bad. We do understand what you are going through. I'm so sorry and wish there was more that I could say to make it better.

gentle iHugs x 10!!!!!!

I'm so, so sorry to hear that It just really stinks!!!

I'm glad to hear you got into the trial, though- keep us informed, and vent away as needed

Thanks so much, you are a lovely bunch... It's not been a good evening, I'm shattered and off to try and sleep. Hope you all have a better day/night depending which country you're in

Bram

Oh Noooo, Aw Bram you so don't deserve this! My heart is aching for you! I think you still have kids at home right? What are their age(s)?
Mine is spreading too but not as dramatically.
Can you see it visually as well? What does it look like? This is really a bummer, but keep hope in the new drug study.
Do you know what the drug is?
I'm sure I'm preaching to the choir here, but you're taking your vitamin C & magnesium I hope?
I see I'm posting this after you've gone to bed so I hope at least you get some good rest and warmth!
I know how the cold makes you hurt, but I dare not complain to you about being cold

Bram, I am so sorry, You have been such a help to me. I am coping a message to you I posted on another post. (just in case you didn't see it.I know it wont help some areas but maybe it will your hands.
I found a place with therapy putty. AliMed® Color-Coded Therapy Putty is the name. Its $2.75 per color. A lot cheaper than I thought it would be. I use the yellow. It comes in different strengths/colors. The yellow is perfect for me. I also found a hot wax machine at wal mart and amazon for about $30.00. I dip my hand in it in therapy about 5 times dries quick. She then wraps my hand in a walmart bag them a towel to hold the heat longer. After a few mins she has me take the wax off my hand and squeeze it like I do the putty. You can also do the same fore your feet. Possibly poor on other parts with a cup. If you own your own machine you can reuse the same wax over and over. I am going to try a slow cooker with a slower cooker liner so when I need to replace it , will be easy cleanup. Love them. I use them whenever I cook roast ect. Make sure the temp is between 115-125 or else you can burn your skin. You can buy the paraffin in the home canning section cheap and can also add 1 cup of mineral oil to it. How long after your hand symptoms started did it disfigure? I know we all progress at different times. but would love to know how long it took yours. I was wondering if that wax machine could help your bad hand get back to normal, because the wax treatments help with blood circulation. I have heard of them getting better after that happens then use the putty therapy. Hope this helps. You have been a big help to me already. Jan in Kentucky.

Bram, I'm so sorry your rsd is spreading. I wish I could do something to keep it from spreading for you, but all I can do is to tell you that I care about you and that I'm always here if you need a friend, (even though I'm a crazy friend!).
When my rsd spread from my right wrist and limbs to my left arm and foot, I was very upset too. It happened slowly after a course of two years and my pm dr had told me it was probably the rsd. I know it is by the way it feels and looks. It's a very distinct feeling, as you well know. I'm so sorry again that this is happening to you and am sending soft hugs your way, with hopes that your rsd will go into remission or at least stop spreading. Sincerely, Renee.