It's been awhile since I've written. Been having terrible pain in my back/spine/hip and butt.
It was so bad I upped my last pain management appointment to bypass going to the ER. They gave me a shot of Toradol which barely took the edge off. A couple of days later they prescribed me a Medrol pack. A medicine one takes 6 of the first day, then 5, 4, 3 and down until completed.
During this time the man went out of town for 2 days on a previous commitment. He would have stayed home but I didn't want him to cancel.
I was watched over by the other man of the house and our son.
I was forced to resort to the use of my walker... and for days I needed assistance just getting to my feet. I couldn't stand straight or raise my back up to it's proper position. I could only walk slouched over for days. Finally I was able to raise, but oh my did it hurt. It began to ease and within a day or so it was back.
I've been stressing over the fact that I haven't been able to do dinners and chores like I want to. A couple of nights a week the men fend for themselves. It really hurts my feelings. I feel worthless. I know they understand. If they didn't I would be forced, but forcing me wouldn't get the job done either. I'm just grateful I'm not put down over it.. I put myself down enough.
Dad finally got out of the hospital just days ago. He beat a staff infection from the first hospital. He was in a second for rehab, spent time there and was able to go home. He has a long road of recovery ahead of him. Am thankful he made it home.
I was asked to be a guest on an online radio show... Living with RSD.. and I'll be speaking about functional restoration.. will let those interested know when my show date will be. I may not post it here, instead privately for privacy reasons and to protect the station from any spam or unwanted advertising since my blog is all of me. Some things should be separated.
I was honored to be asked and chosen for this. It's an hour long segment and live. People can call in and ask questions during the show. For those who can't listen live, it will be archived and downloadable.
I don't have any other doctor other than my pain manager. Not even a primary physician. More must be going on... and part of me doesn't want to know while the other part tells me to find out or else.
Pain is a sign of something wrong.. it's our warning that there is.
I know my body enough to distinguish Fibromyalgia pain from CRPS pain. Fibro pain is a result of fatigue and stress, muscle pain. CRPS pain burns and never lets up.
Some think Fibro and CRPS are the same. They are not. Similarities exist, but major differences.
My left side has been hurting even more trying to compensate for the lack of my right.
My last block did help the pain in my knee.. phew! It's still helping it, but gradually wearing off. It returned to the rest of the right side soon after. I did get a decent week. I know for sure I was blocked at L2 and L4, but not entirely sure the other areas.
Blocks are taking a chance...sometimes they help a little, sometimes not.
After the 5 day Medrol pack, I got a break in pain for a time being enough to clean both bathrooms, the kitchen is rarely dirty and even though I stressed over it, its' been kept up.
The man or son vacuums and everyone takes care of their personal areas which is of a great help. Plus it's there own areas which is not by business to mess with anyhow.
The garbage is our sons job though I often pull it up and replace the bag. He gets behind on it. I don't like nagging and end up doing it at times and so I do it myself except for taking it out.
Ugh summer is near. I can't handle the heat. It makes my skin feel like it's being bitten. I'm not able to wear too much clothing as is.. I worry about the heat and not wanting to wear any.
But I have to. (mostly)
I am looking forward to not feeling the added pain from winters barometric changes.
All I can do is make it from day to day.. moment by moment really, nothing is consistent but pain.
I try to keep smiling.. and often do.
I may have to go back on previous meds and am trying not to go backwards.. in many ways it's inevitable. I can't stay in bed all day. Getting up is harder and harder plus I miss out on living and seeing the sun shine or the rain pour.
I have absolutely no energy and it can't be my meds, I don't take enough to keep me sleepy.
I feel so behind...
but I haven't let go of hope.
Until next time...
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6 comments:
I'm so sorry that you are having an even rougher than usual time of it. Do let me know when you will be on the radio, and I'll try to find it online.
You might not have seen the update I posted in the response section after my last blog entry, so I'll put it here.
"The pain specialist gave me a different diagnosis than the internist. He thinks I have syringomyelia, which is also a nerve related disease that turns its victims into pain-wracked invalids. However, it progresses slowly in most cases, and there is a surgery that is effective 50% of the time (they only do it when you're situation is quite bad because of the risks involved in going into the spinal cord and deflating the cyst that is causing the problem).
"He gave me a prescription for a drug called Neurontin that made the leg pain disappear almost completely within two days. Now, I only feel it a little bit and only then when I'm thinking about it.
"Leg pain combined with shoulder pain are symptoms of the disease, but the new drug hasn't helped my shoulder pain in the least, which I take to indicate that it's not caused by syringomyelia but by arthritis on both sides and by my recent surgery on the left side. It takes a year to recover fully from these surgeries, and mine were done four months and thirteen months ago respectively. Last night, I did my darnedest to sleep without drugs, but the pain was such that I took Dilaudid (a very strong painkiller) AND used ice. Even with all that I could only doze for a few minutes before the pain would wake me up again. I'm just hoping time improves things, although I suspect I'll eventually end up having a shoulder replacement on the right side at least."
I just read your post again. I am ever amazed at your strength. I've frankly been amazed by my own toughness, yet my situation is nothing like yours. I've said it before, and I'll say it now. I hold you in highest esteem.
Hi Snow
Thank you for posting me your blog entry.
I took Neurontin for 5 years and up to 3,200 mgs a day. Very high. It did ease my pain. It's an anti-seizure medication often used to treat Epilepsy.
It was one of the meds I gave up last summer, but am at the point I'll need to go back on it.
Your second diagnosis sounds quite scary. I saved the name and Googled it and then saved that page for research.
Ice is a no no for RSD/CRPS so be sure it's not making you worse.
Is it possible you might have both?
I'll let you know when my show date comes and send you the link to the station. If you miss it, it's downloadable after as well.
I'm a bit nervous.. but honored.
Thank you for the compliment. We both have to be tough and take it day by day, moment by moment.
Wishing you pain eased night,
~Twinkle
I'm taking 300 mgs of Neurotonin but am allowed to take 900 mgs. In olden days, I would have figured that, if a little was good, then a lot would be better, and I would have taken 900 right off the bat, but I'm more conservative now.
Yes, the diagnosis is scary, but knowing you--plus what I've read on the Internet--has really put the fear in me about CRPS, so I'm actually less scared of syringomyelia.
I guess I could have both diseases. The pain specialist's point was that he would need to see more symptoms than burning legs alone to think I have CRPS, although he admitted that it's possible.
I know about ice and CRPS. I used ice all night every night for over a year, but then last month--out of the blue--it seemed a hundred times colder. I still use it, but instead of putting a blue ice pack directly on top of my shirt, I now put it atop TWO folded bath towels, and that little bit helps a lot.
I gather from my reading tonight that high doses of Neurontin are commonplace. Apparently, you have to keep upping the dosage to get the same effect. A great many people seem to put on a LOT of weight, as in 30-50 pounds. Did you have a problem with weight gain?
Hi Snow
Yes I did have a problem with weight gain. I gained and eventually stopped gaining more with the increase, but couldn't get the weight off.
I also took a med called Lyrica (pregabalin)
The worse weight gainer ever. In a short time of less than 8 weeks, I gained 20 pounds.
I tried that med twice and quit it for the last time in 2007. Never again, it also increased my pain badly and probably from the quick gain.
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