I haven't posted in a long time, but no one else knows what I'm feeling or what I'm thinking so, I'm here to share/vent/etc.
I was first dx with RA last August.I started out with mtx ( got too sick) and switched to Arava. Three months later, I still didn't have any relief in any of my symptoms ( swollen/painful fingers, feet, wrists, ankles), nodules under my toes and fingers and a really odd feeling every night when sitting where I would have to constantly stretch and flex my feet because it felt as if the muscles in my feet were too tight. Another weird thing I noticed was my calves were rock solid- which also hurt. During this time I was also receiving weekly venofir injections because I was anemic ( I had gastric bypass 7 years prior).In December,I started humira injections and for the first time since the summer, I felt NORMAL. It was very shortlived however, because after each bi weekly injection, I would come down with one bug or another- two bouts of bronchitis and by the time I was over those bugs and resumed my injections, I did not get the relief that I had, in fact it was as if I didnt take anything. My doctor started the paperwork for my insurance company because I wanted to start Rituxin because I could not tolerate the pain nor the depression that I was living with due to my limitations. The next bug to get me was pneumonia- even though I had the pneumonia vaccine! By the time I was finally approved by my insurance company, I had another new " thing" - I had really bad spasms in my stomach ( for the ladies- it was as if I was 9 months pregnant and having braxton hicks contractions) that would not stop. I also had a bad burning on my left side, and when I sat down, it felt like an alien was trying to pop out of my left side. The worst pain, though, was a feeling as if someone had a tight belt under my breasts at the top of my ribs and was squeezing it tighter and tighter. My primary doctor had no idea what was wrong, so he sent me for a ct scan and ultrasound. The CT scan came back with a mass on the outside of my liver. Saw a surgeon who viewed some old films from two years ago of tests I had done and concluded that it was a calcified gallstone and that my pains were unrelated. I actually left her office and cried- I was so frustrated that no one knows what is wrong with me ( other than my rheumy) and I had no explanations for the pains I was feeling plus the new things that were creeping up. For example, I had been back in school since last year and I was having the worst problems with expressing myself when I had to write a paper. I could not get my thoughts from my head to the paper and there were many times that I would sit in front of my computer and not be able to do what I needed to do. Thankfully for me, I had professors who knew I was sick and gave me grace periods for extending the deadlines but this is happening with greater frequency and to that extent, my memory is declining rapidly and I often feel as if I am in a fog. I even take Adderall for my lack of focus issues and although I take a considerable dosage ( 20mg 3x a day) it is not helping me. My pains are 10x the amount they were last year, all I want to do is sleep, I'm a mess to be around, I've gained about 20 lbs since March ( heh even with a gastric bypass surgery!) and my skin feels as if it is stretched so tighthly over my growing body. My vision ( which I already wear contacts for) is getting worse and my handwriting stinks because I get the worse cramps in my hands whenever I am using them to do something of dexterity.
I was so sorry to hear your story of pain. I wanted to respond because some of what you are going through is familiar to me. I have had tons of swelling on my hands, feet and knees. Not going down with methotrexate or prednisone. Also at night I have ben getting cramping in my feet and occassional tightness in my calves. I have been in a "flare up" since December. Unfortunately I have had weight gain, and feel that some days it really drags me down emotionally. My hope for you is that you will get answers, and use that to gain inner strength. Also maybe a local support group wold help.
Thank you, Karen and I'm very sorry that you're in a flare up since December too :( I had no idea that these episodes lasted this long and I fear getting worse with summer here ( well it just arrived here in NJ ). Nighttime is the worst for me- it used to be, that I would take a zanax maybe once a week to get to sleep because of the pain- now its been almost nightly for the past two weeks. I cannot take pain medicine during the day because I have two children and I work part time, so I pretty much get through the day until my husband gets home from work- usually around 8pm. My part time job is also part physical too- I work for a specialty retailer and while part of my job is handling the office work, we get trucks in once a week and unhauling the freight is part of the job ( tomorrow morning we have one at 730- well i should say in 4 hours) and it's about 1100 pieces. I will be done for the next two days because while I am not in pain doing the work, its when I finish and sit down that every part of my body turns to cement :) I've looked into local support groups but there isn't one in my area ( odd ) and I don't have the energy to travel too far at night. That's why I came back to this forum- I have no one else to talk to because none of my family/friends knows how I feel. Hugs,
Faith
Faith,
glad we are able to share our thoughts on this site as well. When you physically look at us, we probably look pretty normal, it's what we are feeling inside that no one else can possibly understand. This site is my vice for getting through. I have a 9 year old son who is big time into baseball, and a full time job. I feel like I havent slept in months. The fatigue is probably one of the worst parts of the whole illness, because it tears you down in ways we can not describe.(not to mention makes us moody) wish you lived here, I was thinking of trying to start a supoort group here. Hang in there hon.
The same with me I will push my self in pain and do some things and when I sit down it feels like my legs have turned to concrete, wood whatever and I have pain just getting up from a chair. So I better get it all done at once as I know once I sit I am finished for the day. I work in accounting so I sit a lot my days at work are the most painful even if I take something. My OB will only gove me 30 hydroco so I use them only when I have something important but they really don't relieve that much pain?