Saturday, June 23, 2012

CRPS and our other Pains and/or diseases ; does it affect them?

Someone once asked me if CRPS pain is worse when you have other illnesses and/or pain. 

In other words, for me, I have Fibromyalgia, common for CRPS patients, CFIDs (Chronic Fatigue Immune Deficiency Syndrome), DDD (Degenerative Disc Disease), FBS (Failed Back Syndrome), some eye problems; well, let's stop there. I know many of you have something in addition to your CRPS as well, maybe not as many things as I have but remember, I have had a long time to collect things along the way ;-D   I have friends who have had CRPS even longer than the nearly four decades that I have who have a few more issues than me so I feel fortunate!  (that does not mean it happens to everyone or even most everyone so don't start panicking folks).

So, do these other disorders/issues make my CRPS worse? When these other disorders "act up" does that make my CRPS worse? How do my Drs treat these other disorders and the CRPS at the same time?

Again, I can only go by my own case here and how I and my Drs deal with it. Each case is different.

My CRPS is full body or systemic. I was fortunate in that I had about 35, if I remember correctly, HBO treatments in 2008. They went very well and I am still doing fairly well because of them. I don't have the 85% relief today I had right afterwards but there is still a fair amount of relief of the CRPS pain. I don't take anywhere near the amount of pain medication I did many years ago for the CRPS. It also helps that in 2003 and in 2007 I had low-dose ketamine infusions. Before that first one I was spending most of my time in a wheelchair and on so many medications I barely knew what time it was and I was so pale I looked like I was dead half of the time. It is amazing how few medications I am on today, especially given the things I still deal with, pain and disease-wise. I am thrilled. 

I was on Opana ER and doing fairly well until they changed the formulation in March of this year, similar to what they did to Oxycontin ER in the fall of 2010. They changed the formulation because some people were abusing the drug, breaking it down, snorting it, whatever. Within days it was on the internet how to do the same thing to the new version so I am not sure it was very effective but the coating they put on the new versions seemed to make a lot of people sick to their stomach and/or not get as effective a dose before it left their bodies. Bottom line, many pain patients went in search of something else, again. 

I switched to the fentanyl patch. Some people like it, others have a problem with the adhesive itching too much. I admit, it can be itchy. It took me a couple of months to get over that part of it but the trade off between the side effects of the pill opiod and the patch, which enters your blood stream directly instead of passing through your stomach and intestines and all the side effects that can cause. 

Bottom line, since I am not sure why I got off on this tangent, is the patch has been great! I put it on, lasts for three days! No having to remember to take the pills, no constipation from the opiate pills (a side effect all pain patients know about), none of those weird side effects that can sometimes take place with the other pain meds. For me anyway, it is much better that either the opana or the oxycontin. Everyone is different of course and I am no medical professional, just a fellow patient. The fentanyl patch is an opiod-agonist, for many patients these types of opiods seem to work more effectively than others. 

- what is an opiod agonist? An opiate agonist gives the user the same feeling as would be experienced by an endorphin, which is a natural compound. The receptors in the brain that feel effects from opiates receive the opiate agonist and feel an opioid effect, even though one isn't really happening.

Read more: What Is an Opiate Agonist? |

Ok, so how does my CRPS affect my other diseases?

Well for many years the CRPS pain was so overwhelming it well, simply overwhelmed the other pains.  I had issues because of the other diseases, the problem walking, the disabilities due to the back, the fatigue and exhaustion due to the Fibro and CFIDS, dry mouth, eyes, etc. due to the CFIDs, the severe back pain from the DDD and the FBS, etc. but the pain from the other diseases was often masked by the CRPS. As any of you with the disease can attest, its pain is all-consuming.

But many times, when one of those diseases decides to reach out and bite you, you feel it. If one of them has a flare, you know it. Just like when the CRPS has a flare, you know it. 

I have a lousy back, ever since my auto accident back in 1985; broke my back, ended up with surgery, spinal fusion, laminectomy, etc. Anyway, when it decides I have done too much it simply tells me . But not until the NEXT day. Pretty inconvenient! It can also then have a domino effect on the CRPS, even if the CRPS has been fairly quiet, meaning only a 5 or a 7 instead of a 8 or 9. 

Anyone who has had spinal fusion, severe back trauma, back surgery, anything along these lines where  you spent time under the knife for your back, months in rehab probably learning to walk again (not as easy as it sounds folks) will understand what I am about to say.

"Please, if you have not had any of the above types of surgeries and accompanying rehabilitative physical therapy, if you know about our situation and you see that we are having trouble with our back, (maybe we are using a cane suddenly, or you heard we have been forced into bed-rest for a few days, or you see us having extreme difficulty standing or getting up), where we don't normally have these issues; please don't regale us with stories of how you also have back problems because;

1) Your mattress isn't what it used to be.
2) You over-did it with the kids rough-housing last night.
3) You spent a little too much time playing golf over the weekend.
4) Once in a while your old football injury kicks up.
5) Your wife is pregnant and you are experiencing "sympathy pains".

You might think you are commiserating but in reality you are minimizing our pain, making light of a situation we are already having difficulty dealing with, and especially because most likely our back pain has escalated our other chronic pain issues such as CRPS. 

I might also suggest you take a step back because some people might want to slap you for some of those answers listed above ;-D   Not me of course, but some people might. Maybe even your wife if she hears you say number 5!

So two weeks ago I was doing some volunteer work at a food shelter. Nothing major. I try and am careful not to do heavy lifting, twisting, bending, etc., the behaviors I know will lead to making my back scream and/or my CRPS get overly upset. I also keep my time there restricted to short bursts of an hour or so. 

I know it may sound weird to many people but the people I volunteer with know my situation (the chronic pain issues), and know I have to be careful with regards to how long I spend there and what exactly I do/don't do. They keep an eye on me! Sometimes I forget and try to act normal you know, like we all do; do normal things and forget that we have these diseases. Unfortunately, the next day or even later the same day the disease comes back and gives us a painful reminder that it is there and says, HEY! I didn't like what you did back there! I saw that! You lifted three cans instead of two cans. Uh Uh Uh, no no. Just for that, here is a little extra pain for ya!

Normally it is not an issue because I have had CRPS for almost 4 decades now, my back surgery was way back in 87, my fibro started, well, it has been many years for all of this stuff and I have grown accustomed to what I can and can't do. But typically once a year or year and a half, I mess up. I end up over-doing somehow and a day later I end up with back pain so severe I have difficulty even walking. After two days of this type of pain I can tell if it will either;

1) Go away with rest, heat, and soaking in the tub, or

2) Require an epidural injection of the lumbar region.

This time it was an injection. I knew it after one day. It took longer to get simply because my Pain Dr was on vacation. Fortunately he was back in town for a few days and squeezed me in a week later, gave me the shot on Monday, and I am slowly recovering. It takes a while, a week usually even though I am walking again later that day. The back pain lasts a week or so simply because of the impact of the whole situation on the CRPS and the overall back. 

When you have one area of the back that is weak, for me it is a herniated disc just above the site of the surgery and too much or the wrong kind of activity puts pressure (or compression) on the nerve where it exits the disc space, which sends pain radiating down the back (which is why they call it radiculopathy 

Anyway, long story. Many of you know all about this so I don't need to explain.

Bottom line is that these types of things; back pain, disc herniations, fibromyalgia flares, flares of other diseases like CFIDS, or whatever you have to deal with, all of these things, when they flare up they can make your CRPS pain/symptoms flare up as well. 

This can cause many patients great worry. They may feel as if the CRPS is spreading (because they may feel symptoms in new places), or they may feel their disease is worsening, but typically the CRPS will calm itself back down shortly after the other disease calms itself back down. It may take a little longer just because CRPS affects more of the body and the bodies systems but usually it happens. It takes you a while to learn how your body reacts to all of these things going on, so you have to pay a great deal of attention to it.

I tell people all the time, now that you have CRPS you have a new full-time job. It isn't a joke. Having a chronic illness is a full time job. Between managing the medications, Drs appts., insurance companies, learning the disease/medications, understanding and researching various treatments, learning how the disease will affect you long-term, not to mention juggling the financial aspects of a chronic illness and how the whole thing affects your family and the emotional counseling involved there. How many hats is that so far? 

So yes, I would say that CRPS does have an effect on other pains and illnesses ;-D

Peace, Keith Orsini

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