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.

Personally I prefer a longer acting medication, if you can get ahead of pain it is more effective than chasing it all day. I know that prescribing opioids is now a big deal and many docs are very conservative about it.
My first pain doc went to Methadone because it works on different receptors in the brain, which are thought to be the ones involved in CRPS thus making it more effective. It is also designed to not give the "high" (it is the medication given to help heroin addicts get off heroin) so it makes it technically less addictive.
My second wanted me on buprenorphine (the Butrans patch) because he felt it was better/safer for my body long term (do less damage) than Methadone. Again, it is a suboxone medication, so designed not to give the "high."
Norco and Percocet were completely ineffective for me.
The med that helped most with the burning was gabapentin (the base that Lyrica came from) in higher doses every day. I can't speak to a medication regimen, I'm not a doctor. But if your pain level is still high, there is certainly room to increase all of your med (I don't know about the Celebrex) quite a bit. (ok. in my opinion you are undermedicated).

The other thing would be a good PT program. Quality PT makes a huge difference. Desensitization, gentle stretching, etc.

Thanks!! My pain management doctor doesn't seem to hesitate to prescribe new meds, both narcotic and otherwise. I have a follow up with her tomorrow.

So far I'm finding that PT is not helping. I am doing things they taught me every day but when I go to aqua therapy it just flares everything up for days. I find I'm much better doing a regimen of stretching, walking 4 miles and desensitization therapy on my own each day than I am doing the aqua therapy or going to sessions. I'm also going to gentle yoga a couple times a week. It's all painful, don't get me wrong, but I'm determined to hold on to my mobility as long as possible. When things flare up I back off for a few days.

Today's a bad day but I was on my feet most of yesterday which is almost always a precursor to a bad day. I am still working to find that happy medium of doing enough without doing too much especially on the weekend when my child is home and I'm running all over the place.

Saw PM today and she's upping my doses all the way around, including frequencies. Hopefully it will be helpful. She also mentioned I may be a candidate for a spinal cord stimulator but I'm hesitant to go that route. It freaks me out to have something implanted in my spine honestly and I'm hesitant to do anything that involves more invasive procedures since all of this originated from a surgery. I'm also going to a neurologist to do some nerve conduction studies to see if they can identify which nerves are the most impacted and maybe do a sympathetic nerve block, but same concerns from me.

Not really sure what the right answers are and the lack of concrete information makes it hard for me to make decisions. Anyone else suffer from analysis paralysis? Any thoughts or insights on the above options? I'm hoping med increases will be sufficient and it won't come to a SCS or block.

Anna, there is generally no lack of paralysis by analysis when it comes to CRPS! I did so much research on it when I first contracted it that I had to finally just stop for a while and went back to it at a more moderate pace later. So I get ya there!

I think slow and steady is the right pace for you which I see you are doing. The meds increase is for sure the first thing to try. Maybe if you increase the Lyrica you can get off of the hydrocodone, something I would want to eventually consider as IMHO, it's not a good CRPS long term med.

The stimulator is something to consider way, way down the line. Yes it works for some but certainly not for all. And there is even a chance of spread with the implantation of the device. So lots to think about there. I did try nerve blocks but they didn't help me at all. But they help some!

Best of luck to you, I really like your thought process so far. Stay the course and be sure to keep us updated; we're all in this together!

That's my thinking and my hope! I definitely do not want to be on opiates long term if there's a viable alternative. With the spread into my arm the hardest part is honestly washing and drying my hands! I know that sounds crazy but its excruciatingly painful to do so this week. I'm only on the first day of increased dose and it seems to be helping a lot, thank the lord!

For the SCS I really am not open to it at this time but will take info and gather research in case I need it down the road. I would prefer to never have another surgery, honestly.

I also didn't want to go that route, and I made it abundantly clear to my pain doctor that I didn't want an implant and I didn't want blocks - so we just stuck to medication (pain patches + Neurontin mainly).

It is hard to make decisions around your health, but your doctor has to be willing to work with you on this. Voice your concerns to her/him clearly.

And it is totally understandable that you don't want more surgery if it all stemmed from surgery.

Good luck to you!