My Fibro Friends....the following discussion was posted by me on Living with TN. I have Geniculate Neuralgia caused by a bad case of the shingles 3 years ago and have been undergoing treatment for a bit over a year now. I felt I needed to share it here as well not just because I have Fibro but because you all know how something like this can aggravate our Fibro. Mine is quite aggravated and the coming week promises no relief. I'm really having a rough time. Thank you for taking the time here now and thank you for keeping me in your thoughts as I do you all. PeacenLove~Always~Laurel aka Northwoods G-Ma
Good Morning, I hope everyone had a warm and happy holiday.
I did not! (Oh! That sounds awful) Well...it was happy for a bit, the children were delightful. I got everything I needed plus a camera~YaY! We were all together and happy....I just spent the rest of the day in bed or in the bathroom retching.
I did not make it downstate on the 23rd for my 4th P-Stim treatment because of bad weather. I talked to my nurse and told her that I was going to test my pain level again because I was having less and less breakthrough pain and not having to take as much Lorcet for that. I was getting by on 40 mg oxycontin morning and night and my pain was controlled. I told her that I thought either my Gamma Knife or the P-Stim treatments were working and I was going to back off on the Oxy to test my pain level. I do this about every other month because if my pain was subsiding I would never know from all the other meds I take. I have my Dr.'s okay to test myself. In the past I have had pain return within 12 hours of quitting the Lorcet. This time I had already discontinued the Lorcet so I backed off the Oxy by half and within 24 hours my pain was back 10-fold. I was in misery...hurried up and got my med levels back up with both the Oxy and the Lorcet.
The Lorcet usually works for 5-6 hours and starts relieving pain within 15 minutes. Not this time and not now :( It took nearly 45 minutes for the Oxy and nearly that long for the Lorcet. The Lorcet is now only giving me about 3 1/2 hours of relief. The pain is so intense that I almost feel like I need more oxy. It's pulling my jaw down and the gland at the jawline is knotted up and aching. I've been spending the better part of each day in bed on a heating pad since Christmas Eve. I don't have an appointment again until the 19th of Jan. It's gonna be tough to make it until then.
In the past two weeks I have had an EMG and an appointment with my podiatrist. With those appointments I got two diagnosis of PsA in legs and feet (also arms and hands) and Sensory Neuropathy in the legs, knees and feet. The Neurologist that did the EMG was baffled as to why a 58 year old woman would have the advanced neuropathy that I do. I reminded him that it probably is genetic as both parents, a grandmother and both brothers have it. My mother and father both lost a leg to this neuropathy. My father passed shortly after his amputation. My mother is doing very well since hers...the bad leg was making her very ill. Autoimmune disease runs rampant in my family as well.
I've got a slew of appointments coming up now since these diagnosis. I can't get back down to my neurosurgeon fast enough. I just can't get a handle on this pain....my quality of life has gone downhill fast since I tested myself. I don't know what can be done. She (my surgeon) won't do another Gamma Knife, won't do MVD, so I just hope that the reduction in pain I had that led me to test myself, is from the P-Stim treatments working? I sure hope so. It also could be from the Gamma Knife, I guess sometimes it takes months to kick in.
In the meantime I'm just trying to take it as easy as I can. I still have chores around the home that I am trying to do but have needed help with those. Bad weather is heading our way again and I'm like a walking talking barometer. It's going to be an extremely painful week with temps not rising above single digits! and a snow storm to add to our already 2 ft. of snowcover. It's beautiful here, don't get me wrong, a Winter Wonderland...I just can't tolerate it anymore and only go out to go to the doctors, physical therapy, etc. and to tend to the ducks and chickens and to make my way to the workshop for my chores there. It's not very far from the house but when it's -3 it might as well be in another state.
Another thing that's been going on since my test is really bad vertigo when I'm in bed. I was having vertigo with the P-stim treatments but it would stop once the contraption was removed and it was happening all through the day.
I guess, in a nutshell, I'm just plain miserable. I can't sleep because of pain everywhere, tingling/burning in my hands and arms, the pain in my ear jabbin away at me all night/day, the covers cause pain from toes to knees and my back (3rd stage spinal degeneration/scoliosis) just doesn't allow me to find a comfortable position. Either menopause or the medicine combinations have me hot flashing at least 20 times a day, no exaggeration!, and then there's the cold sweats from extreme pain I'm guessing. I'm losing this battle....finding it hard to smile and am so sad to be missing out on all the festivities and doing new projects with my g-babes that they got for Christmas and they say" We want YOU to do this with us Lolo" Makes me feel great and sad at the same time because I am so agitated from fighting pain that I'm not really the most cheerful Grandma on the planet. Pretty Grumpy!!! My mind is in the pooper as well and I've lashed out at family recently because they are or can be pretty critical of what comes out of my mouth. I don't get things correct very often...in my mind they are but once past the lips.....failure! I don't feel very intelligent any more, I don't think I am but it hurts when they talk to me like I'm just plain stupid, or give me the look of disbelief. I told hubby about feeling this way and at least he supported me and had noticed the comments and the hurt it caused me. He's a sweetheart but had to go back to work the day after Christmas and won't be home again for another 20 days...boo! :( He's not doing the greatest either with working outside in this harsh weather with RA and COPD. He's got a note from his Dr. but he's afraid he'll get let go if he uses it...he's handicapped and the cold could damage his limb if exposed over long periods of time...he's stubborn and doesn't want us to lose our insurance. If it's not one thing it's another right folks?
Anyway, thanks for listening to me and taking the time. I know ALL of you are in the same boat as I am, probably bigger boats ;). I've just been thinking about opening a discussion about all of this for a week now and finally decided to go ahead with it. It only took me 3 hours to write this little bit. My hands keep going numb....crazy huh?
I hope this finds you all in better shape than me. I keep all my BensFriends in my prayers nightly. I am so glad we all have this site to come to. It's hard to talk to anyone else about these things....I'm glad I've got you all. Thanks again. God Bless!
PeacenLove~ Always~Laurel aka shinglesdidit
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