There are some things in life that actually hurt worse than the physical pain of CRPS.
These are the emotional stings of CRPS, and they run deep.
Over the years, as I’ve fought with so many serious health problems, I’ve come to recognize that lonely, stinging pain of loss that’s hard to share with other people. It is so personal, so close, yet rather than comfort in its closeness it brings a sense of isolation. It’s nearly impossible to put to words…and even putting it to words doesn’t seem to do it justice. It’s a grief all its own.
Every now and again this feeling of intense grief and loss will wallop me out of the blue. Sometimes it’s predictable, most of the time it’s not. My wordless, stinging companion came for a visit again today. Perhaps I should have anticipated its smothering nearness, as the signs of its arrival were fairly obvious.
I had a good appointment with my pain management doctor today, Dr. Z. I’d say all went well. She’s a very nice woman, and has a way of delivering even hard news such that you still feel a twinge hopeful afterwards. Hey, at least she smiles genuinely and seems to be a person who likes life, which is better than I can say of 80% of doctors out there who simply come across as miserable chums only one notch happier in life than lawyers! Besides, she has the bounciest curly hair that’s salt and pepper (guess her website pic is a few years old?), friendly eyes, and even if she were having a bad day, her happy hair might well hide the fact. Actually, I chuckled as I drove home considering that the owner of such curls may think she has perpetual “bad hair days” while almost everyone else has hair envy! Isn’t that how it works? Boy I’m off topic….
We started off by talking about the nerve block I had about two weeks ago. Its handful of positive effects had only lasted from that afternoon until 3:30 in the morning when I awoke to my usual symptoms. I asked if stacking the blocks would increase their effectiveness. She told me that even if we did one or more blocks each week for several weeks, the best we could hope for was a few days of relief, and given that I had a flare from my last block, it may not be worth it. She had used the most effective medication she could for my block. So we took that treatment option off the table. I felt a bit deflated, but knew we had other items on the agenda.
The ketamine cream with a concoction of other meds in it is too sticky and causing me sensory issues so while I may pursue tweaking this in the future, we decided to put it on the back burner for now – it’s not useful enough given the cost at about $60 per month.
Our current plan involves increasing the Lyrica slowly, holding off on trying Nucynta (I feel it’s risky for my gut, but it’s an option if Ketamine fails), and going to try a Ketamine injection trial on Wednesday to see how I react to the drug and if a compounded nasal spray may be a good option for pain relief. I’ll do the injection trial in her office so they can watch for reactions and halt them if they develop (psychosis, blood pressure spikes, migraines, etc).
We discussed radiofrequency nerve ablation too. She’s treated about 6 other patients with CRPS/RSD and the results these patients have had with the procedure have been mixed – sometimes it works well, sometimes it doesn’t. Some of her patients flare badly for 1-2 weeks after the ablation, then get 2-4 months of relief. The nerve endings regrow again, so the procedure has to be repeated. She said except for the very real risk of flaring badly, she suspects I might get a 50% reduction in symptoms with the ablation. At this point, 50% relief is sounding pretty tasty….I guess “fried nerves” are tasty? Though certainly not my first choice for treatment (nor my doctor’s for that matter), I’m considering it more intently now and asking others who have had it to tell me how it worked or didn’t work for them and if they are continuing with treatment.
Doctor appointments are exhausting for me. It’s not just the getting there that wears me out; it’s more than that. Some of it is the night before – I usually don’t sleep much, if at all, partly because I’m scratching down questions for my doctor all night as I think of them, and partly because well….I generally don’t like seeing doctors! There’s an emotional toll in writing down all my questions. These multi-page lists of questions seem to point out all the things I don’t know, how out-of-control this FEELS (not IS, but FEELS). Then preparing myself for the answers I’ll receive during my appointment and planning on “taking it well” even when answers can feel like a solid punch to the gut and I’m counting the minutes till I’ll need to find the restroom again.
There are times when, as I’m receiving my doctor’s answers, I really just feel like crying. I wonder at times what my facial expressions are saying (since I’m naturally overly-expressive to a fault and don’t even recognize it myself) as my doctors talk to me and I process what they are telling me. Can they see that emotionally I feel like a train wreck? Can they see that I’m fighting back tears behind what I think is my “stony poker face,” determined NOT to cry? Do I look angry because my eyebrows are most likely crinkled in the middle as I think through my questions, answers, scribble thoughts on paper, and try to move on to the next question before our limited office time is up and it’s the next patient’s opportunity to grill the doctor? I’ll probably never know.
My conversation with Dr. Z continued. I told her I’ve been fighting with pitting edema in my legs, worse in my left. She told me I really should keep wearing my compression stockings even though they are so painful to put on. This way I can stay ahead of the edema rather than trying to play “catch up” with it when things are already quite swollen. Need to plunk down a bit more dough for a few new pairs, as most of my pairs are stretched out and must be replaced.
I asked her what to do about the summer because I’m finding the warmer weather is increasing my swelling and it feels like my left leg is about to EXPLODE. She OK’d my plan to use a spray bottle of water to keep my legs cooler and said it wouldn’t cool the skin too much or cause circulation problems, so that’s my plan for the summer weather. I was hoping there was a magic pill to make my legs feel their real size rather than 5 times larger than they actually are…there is no such thing, however.
My doctor didn’t have answers to a few of my questions. I’m fine with that. CRPS is a weird disease, there just aren’t answers for everything since every patient is going to be different. I love a doctor who can tell me they honestly don’t know, but then go and LOOK IT UP to help me get an answer, or find someone else who does know.
Dr. Z couldn’t tell me exactly why my dystonia in my left leg is sometimes better, sometimes worse, and why this doesn’t always coincide with pain levels. But she did say dystonia is very complex, involving both the peripheral and central nervous systems, and everything from the time of day to how much I’m eating or not eating or if I’m hot/cold, how I’m sleeping, stress levels, and swelling can all affect the dystonia so keeping my body as non-stressed as possible is key. Using medications is the second half of managing dystonia.
Ok, I’m actually satisfied with that answer. I just like to know sometimes that there IS a reason for the weird and scary things that are happening to/inside of my body. Perhaps I find comfort in the idea that someone else at least has a clue when I do not? 🙂
That was about the end of the good news. Was that really “good” news? Guess it depends how one looks at it. It’s good to me in that we still have treatment options. I’ve not yet been left high and dry trying to figure this out on my own because I’ve exhausted all medical knowledge of this disease. So in that sense, YES, this is good news. There’s something more we can do!
As she was talking, Dr. Z compared me to “other patients who have advanced CRPS” and I thought to myself, “Oh Lord, please tell me I’m not in that category” but I didn’t ask. Somehow I just didn’t have the guts to really come out and ask “how bad do I have this compared to others?” or “what stage of RSD do I have?”. Eventually she slipped it in there anyhow and told me my case is “advanced”. Inside, I groaned, though I didn’t say anything. I already knew it, I think, but hearing it said out loud causes that stinging companion to nuzzle in a little closer. She did nothing wrong in mentioning it, in pointing out the facts.
John Adams is quoted as saying “Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they cannot alter the state of facts and evidence.” He sure nailed that one, eh? Unless you’re an Evolutionist.
It seems like I always save my most painful/dreaded questions for last. I think I do it subconsciously, but when I consider why I save these questions for last, it makes sense…it’s the last hard answer I have to sit through before I get to make the mad dash either out the door or to the bathroom. Besides, when I get the answer to one of those doozie-of-a-question types of questions, it can be hard to keep my brain straight to finish out the job with the other questions that are easier. While I normally save the best candy for last, in this case might as well save the worst questions for last – it never worked to my advantage to save the best candy for last anyways, as family members (*cough* MOM *cough*) always convicted me that “sharing meant giving your Mother some of your candy” and they tended to take the ones I hadn’t eaten yet….the pink and red Starbursts; my favorites! I’m still bitter about that…. 😉
So following a heavy sign, I finally asked friendly Dr. Z about CRPS and pregnancy. My wordless companion of loss was sitting on my lap, and I felt its weight sinking deep inside. It’s just one of those questions/answers I didn’t want to google; I’d rather have a real person tell me while looking me in the eye, especially if it’s hard-to-hear news.
Unfortunately, she didn’t really know how CRPS and pregnancy relate. There’s little to no research on CRPS and pregnancy. I asked if C-section or vaginal birth could spread CRPS to visceral organs or tender areas, and she thought for a few minutes but said she just didn’t know and none of her CRPS patients, all of whom are women, had been pregnant while she has treated them. She did say if I ever got pregnant that the anesthesiologist could do a few different types of blocks on the nerves so that my central nervous system was almost entirely “cut off” from everything waist down and that may help, but there’s just very little information on that yet.
Obviously, with CRPS, any minor or major trauma can bring on a spread of the disease to that injured area of the body. RSD knows no bounds. Given that I’ve had visceral hypersensitivity of the worst sort for years, I have very good reason to believe that CRPS in abdominal viscera would be UNIMAGINABLY painful. In fact, it can be deadly.
When I got home, I felt compelled to find my answer. Google. What your doctor doesn’t know, Google often does. Actually, in this case, it turns out Google isn’t sure either, but 90% of what it pulled up confirmed my fears. Pregnancy and CRPS can be a very painful combination…for the rest of your life.
A pain of grief wrapped around me, one that I don’t know how to share with others unless I write it here. I don’t know who would understand, and I don’t want to subject my aching heart to the comments/opinions of others who want to give advice rather than just ….listen. I want a hug from someone who just wants to ….hug me quietly. THEN my heart would fall open in relief.
So I pray and release as much of my grief and loss to God as I can. It still hurts. But I know He has brought me through intense loss and grief many times before, and He will do it again, and again, and again.
I am grateful my doctor’s appointment went well. I’m grateful I have a sensitive doctor – they are hard to find, and God Himself lead me to her (I’ll have to tell you that story sometime!). I’m grateful we still have treatment options. I would be happy, if I wasn’t so sad.
Yes, in my world, those emotional pains run much deeper than the physical ones. And one day, God will heal them ALL.
P.S. I have NO idea what to title this post! 😛 😀 Wow. I covered everything from grief to my doctor’s hairdo to my Mom stealing – oh, SHARING – my Starbursts to Ketamine treatment. Sheesh. Keeps it interesting though, right? Please forgive me if I come up with some dumb title.