Spreading??
 

I know several of you have experienced CRPS spread. I'm still new to this but am concerned it could be spreading, albeit slowly. Did anyone's spread start off as warmness/burning feelings (but relatively mild) in other limbs? My primary site is my lower right leg and I first started to feel it in my lower left and the past few days in my right arm.

I'm currently on celebrex, lyrica and hydrocodone. I'm also doing desensitization therapy as well as aqua therapy to help control it.

If this sounds like spread has anyone done anything to successfully halt it in its tracks?

Thanks in advance!!

Spread is not uncommon with CRPS. That being said, not everything that we feel may be related to spread is actually spread.

I am going through something a bit similar. I have CRPS in my right foot. I have had some symptoms in my left leg and foot that even my podiatrist feels could be spread. I had a 3 phase bone scan done in the left leg but that was inconclusive, which doesn't mean that it couldn't be CRPS, but might not be.

I am now going to see other doctors now to get their opinions. One feels that it could be spread; but yet another thinks it likely isn't spread and could be idiopathic polyneuropathy where some of the symptoms are subtle and could mimic spread.

What I can recommend is that you take a 500 mg of vitamin C daily which is something you will see mentioned many times in this forum and others which may help in preventing spread.

Other than that, it sounds like you are doing all of the right things. Desensitization and aqua therapy are both excellent and highly recommended. As easy as it is to say and as hard as it is to do, try to not let your mind race. This is a marathon. Stay on it, stay the course. A positive mental attitude is imperative no matter what!

Best of luck and keep us updated!

Thank you! I am taking Vitamin C, Calcium and vitamin D plus a regular multi daily per the recommendation of my pain management provider. It's odd sensations...she feels it's possible spread, I'm not as convinced yet. Time will tell.

For me every symptom I experienced in my legs (from warm to cold already in my arms, especially the right one), I had in my arms (shoulders to fingertips). You just "know".

So my pain and burning is definitely increasing. Every time I go to aqua therapy they ask if it's making the pain worse. How do I know whether the therapy is making it worse or whether the disease is just progressing? I am really stumped whenever they ask as I don't really know how to differentiate the two. Has anyone else found this to be the case and come up with a good way to tell the difference?

I *think* it's the therapy since I can walk 4-6 miles with only a minor increase for an evening yet have had horrible increases since starting aqua PT. However it may just be a that the disease is progressing and it's all coincidental.

Is there a benefit to pushing through the pain?? I'm just really confused and can't seem to find a lot of information on what the *right* approach is when it comes to PT/exercise. Any input is appreciated.

Anna,

I would say that NO, it is not a good idea to push through the pain with CRPS. Others may chime in with their opinions but that technique actually made my pain worse and I don't think it helps in controlling CRPS.

You might try discontinuing the water therapy for at least a little while and see if that changes things for you. The fact that you can walk 4-6 miles with not a lot of pain increase is encouraging to say the least! It might be a good idea to do what keeps you moving AND doesn't aggravate the pain. I've found that to be the magic combination for me.

It's a little bit of trial and error so play around a bit and maybe keep a journal with your pain scores before and after walks/aqua therapy, etc. Sometimes a bit of data can help sort out what is bouncing around in our brains!

Best wishes and keep us updated!

Thanks Birchlake! That was my instinct as well but my PM doctor touts the benefits of aqua therapy like crazy. However the water seems to aggravate the CRPS more than doing the same exercises on land fully weightbaring. I know I need to keep exercising but I am questioning the benefit of the aquatic option when it's flaring the pain up. I don't realize it at the time as it feels fine, but for the next 48 hours or so it flares like crazy. After my session yesterday I'm almost certain it's related so I canceled my Friday session to see if the flare up subsides a bit.

I first had a PT (physical therapist) that would push through pain. He had to stop with weight training as well, because also both my legs were going into severe atrophy at that point, so electric stimulation is all he could still do.

I lost almost all leg muscle in upper legs after 8 months of PT. At that time they didn't know I had CRPS yet, so PT was my only option. And it hurt like hell.

It took a long time to diagnose (almost 3 years) and get some medical treatment.

If you *feel* that it is making it worse, I would stop and go back to your doctor and discuss this. In my understanding, pushing through pain with CRPS is not good!!! At all!

When I was at a functional rehab center with doctors and PT's who specialize in CRPS what we are told is to only work to "threshold". In otherwords, to the point where you get that inkling if you go more it will begin to hurt, or have other CRPS symptoms. Pay close attention to yourself when you are exercising. Exercise is important, but only to the threshold, not to tolerance, or through the pain. That applies to people with other problems, not us.

And since we all know that CRPS can have delayed sympoms, if you realize that what you did was too much because it caused flare later that day, then you need to do less of that next time. Because causing flares is bad, it only reinforces the pain pathways, which is not what you want to be doing.

Aqua therapy can be good, but only if your affected body part is tolerant to the water. I can only tolerate immersion for a brief period of time for my foot, so the one time I tried getting into a pool for 5 or 10 mins I really paid for it the next day.

As far as spread. I had minor spread to my left foot. It took a long time (several weeks) to be sure. I KNEW when it began to turn that lobster red color and become hot to the touch in that zone only. My pain doc at that point ordered an immediate sympathetic nerve block, and it worked and shut down that spread completely. The key there being it was done right away so it couldn't then go farther in my foot. I had just noticed it moving a bit farther in my foot.

There had been other times I "thought" I might be having spread. But I didn't have those key symptoms. The serious burn. The bright red/super hot to the touch compared to surrounding area.

Thanks Becca! A quick update - definitely experiencing spread to my right arm/hand and left leg/foot despite only being diagnosed in the past couple months. The shiny skin, intense burning/pain and extreme sensitivity to sensations is occurring. I'm going to ask about the sympathetic nerve blocks and/or increasing my lyrica dose since that seems to be the most helpful and I'm on a very low dose right now. It doesn't stop the burning but I'm not sure anything will at this point, honestly. I'm seriously dreading winter and the cold weather knowing that can often make the pain worse.

My current regimen is 100mg celebrex, 2x/day, 50mg lyrica every other day and 5mg hydrocodone as needed (up to twice a day). In the evening when I take all three that's about as good as it gets and that takes the burning from an 8 to a 5/6 which is totally tolerable/acceptable given the circumstances.

Does anyone have any input on this regimen or anything else I should ask the doctor about? The hydrocodone helps but only about 4 hours so I have to be strategic as to when I take it. I usually take them immediately following PT/exercise and 3 hours before bedtime. I'm going to ask the doctor next week about either being able to take them 3 times a day or switching to something a bit longer acting.