Way too much pain

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Maybe it's good, maybe it's bad, but writing helps ease some of the pain from my legs and arms. I had a good day but tonight it rained and cooled off. Maybe my joints just can't take it. I've spread pain relief lotion from my knees to my ankles and my feet have their own creams. Praise God, the Tylenol helps my hands. I was taken off of narcotics for my fibro about a month ago and usually, it's not problem, but tonight, I wish I could just apply something to the pain! I also thank God that I have a small amount of Valium to take the horrible edge off. It truly is like knives slicing through my joints. When I see my Dr., (or Dr.s,) I will mention this horrible occasional pain. I understand flares as I've had about five since I stopped the narcs. Either I didn't notice or I was less stressed before, I just didn't seem to have this many flares. So much pain. Hopefully I can go to bed early and tomorrow will be a more promising day.
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  1. serand4's Avatar
    It's a much better pain day today. Instead, the Lupus stole all of my energy this afternoon after I didn't put my 100 spf on this morning. That's how you learn, I guess. Between the fibro and Lupus, everyday is an adventure. I tried a new sleeping pill last night from my doctor but found it stopped my bladder from working again. It was the first time I ever self-cathed and it wasn't as bad as I expected. I just know that the sleeping aid is NOT worth the cath. I'll be back to over the counter meds tonight.
  2. serand4's Avatar
    More pain today. I started off strong-- and I do mean strong! I felt literally "great!" for the first time in, well, years I guess. But I overdid things. My hair has changed a lot due to my medication so straightening it is a real challenge. It can take an hour with me on my feet. I lived through that but later did the grocery shopping and when I came home I could not get over the swelling in my legs! I have very few tiny parts but my ankles and wrists are two and both were so large! My doctor wants to do an MRI on these areas that have the most swelling. That will be a tough choice to choose the worst.

    Next month is my Dr. month period. I see nearly every "ologist" there is. My neurologist is Oct 3rd and I am to ask for a Lumbar Puncture. As my ANA scores remain zero, my Dr. is determined to find out what is causing all of this pain and swelling. I'm still curious as to why there would be a need for a liver biopsy but he wants that too. He is undoubtably the most thorough Dr., I've ever had!

    Oh, and I am now into yet another bladder infection. This makes six in six months. The meds will work initially and then stop being effective by day 4 or 5. When I shared this with my Rheum Dr., he had some sort of ephany that I obviously didn't catch. He ordered blood work and told me to hustle in for the tests.

    I used to panic but I don't anymore. Somehow I make it through each day. Writing eases the pain for some reason. Not in my wrist but in my head. If I hold in the pain thoughts, it just amplifies everything else. Perhaps I should start a private diary instead of using the space here! I guess I just want others to know that we often seem to experience similar issues. I just vocalize mine through this blog.
  3. serand4's Avatar
    Today is a better day. Sleep is SO important so when I woke up at 3:00am and couldn't fall right back to sleep I nearly panicked. Ever since my bladder shut down a few weeks ago and then started back up, if I have to take a bathroom break, I don't hesitate. I did fall back asleep with a sleeping pill. I also found some new pain cream to help my legs. I had to thank God that I had enough left on my credit card to buy a few different selections to see what might work. I very much need to see a pain doctor for trigger shots but with six doctor's appts. already, I'm done!

    I can tell my bladder is infected again -- for the sixth or seventh time in as many months. I'll have to call the doctor but there doesn't seem to be an answer to this one. I can't share with my mother as she already is scared to death everytime I say anything's wrong. But I'll still take this over the catheder anytime! I'm guessing this is the Lupus doing it's business. Maybe with all the doctor's appts. I'll find out this month.
  4. serand4's Avatar
    My mother just gave me this cream for my feet. I have terrible neuropothy and usually use a diabetic form just to handle the pain but this stuff is wonderful! It's called J.R. Watkins, pain relief burn cream. It doesn't smell bad and it appears to last. I wish I could use it on all of my joints but they don't burn, they just ache! It's not a bad night so tonight I will try not to complain. I will simply try to enjoy the evening!
  5. serand4's Avatar
    I've been keeping a more private journal since I doubt anyone truly cares about all of my thoughts and feelings on the day to day battle with Lupus. (Frankly, I could use a few days without those thoughts myself). Next week is my big week for testing through neurology. I can't stand the doctor but the tests need to be run. We want to make sure I'm not fighting MS instead of Lupus. I saw my blood doctor a couple of days ago and he's going to start infusion therapy for my low immunity. This should be really interesting since Lupus is an autoimmune disease! But the sniffles and the chest tightening is already starting so I need to get busy and start fighting back or I'll end up like I did last year with one gi-normous illness that lasted three months. I just wish he would've started this back in May when he had the same darned numbers! I was too compliant to point this out back then! Not anymore. I ask questions and I expect answers in English -- not doc speak! I am also being tested for narcolepsy which I truly think is a waste of time and money but what the hec, maybe I'll learn something.

    You know, the hardest part, now that I'm a few years into the "she has lupus/she doesn't have lupus" debate, I want to just give up. My liver is suffering from all the drugs and the only conversation I seem to contribute is in regard to illness. Since I got off the pain medicine, I'm a bit more alive which is a blessing but the pain, well the pain is like a balloon. Somedays it's much more inflated than others. Last Sunday I almost went to the ER just to get pain relief after I fell especially hard on my knee. You see, most of my pain is in my lower body so when my knee hit, it hurt to the point that I didn't move for a full minute and then finally checked for any bone sticking out. Thank God there was none but the pain was excruciating! Today I hit the same knee on my steering column and nearly passed out from the pain. My poor son stood by me (by the car) asking if he should call someone. Instead, I regrouped and simply limped. New rule -- no blood, no doctor! However, I will carry a cane in my car. My balance is shakey at best so I guess I'm asking for trouble.

    Well, my hands are acting up so I'll wrap up. I'll pray, as I do each night, for my fellow sufferers. Take care.