Hi, my name is Lynne. I am a 58 yr old female. I am barely 5 foot and weigh approriate for my size .
I am new on here , so if I do or say something wrong please forgive!
I was dx with RA 18 months ago. It started with just my wrists and arms feeling aches and strained and painful, just went on as usual and thought I had overworked. Second week still hurt bought cloth support braces, end of second week it was my knees and ankles and wrists and arms worsened. By the third week I knew something terrible had to be wrong with me. I was in bad pain, now my shoulders felt like they were pulled out of their sockets like as if I had torn both router cups, by the end of the third week I was bedridden with every joint so hot swollen and feverish and in such pain, I still say to someone when telling them about
it, I had natural child birth, and I would have rather gone through two natural births back to back, than this.
I have done the natural births , have had surgeries, broke bones etc, and other life pains, but nothing to compare to this pain where it feels like someone ripping and tearing your muscles and tendons , and razor blades scrapes up and down on your bones and it never let up just got worse. When you try to explain the pain to someone they just look at you with that blank stare and shake their head saying I am so sorry, "but really can't understand!
I went one for three months like this , going through three doctor visits and countless blood work, with me crying ang begging what is wrong with me. The doctor did not want to give me anything until she knew what was causing it, finally I screamed enough and left enough messages begging she finally gave me tramadol and naproxen.
My doctor was lost and she finally admitted she didn't know and because of the swollen and feverish joint areas referred me to an Rheumatalogist, thank god!
After my visit where blood test and X-rays were done was told I have severe RA and osteoporosis. My numbers were as high as they can get, or her words were your numbers were off the chart.
At this point weeks later I now am so swollen and feverish I can no longer move any part of my body without screaming , i would wake up crying . I was thinking they still have this wrong RA does not do this to a person , I thought RA causes your fingers to ache and bend when you get older, or your knees to ache. But this , you must not know what I have , I never heard of anyone withering in pain like an animal because of RA!
But the doctor said yes it is, the numbers do not lie and proceeds to explain what it can do and what I am going to have to start doing and taking.
I started on Methotrxate taking 4 pills now on 8, and the Tramadol and naproxen , then after getting use to that then start Embrel.
Which I have been on for one year.
Unfortunately I can not seem to be able to stay on because of constantly being sick with the flu or pneumonia , my system is so weak and run down and because of the meds I catch any that comes by.
I have never been able to walk without crutches this past 18 months because my right foot the meds just don't seem to help it , my foot stays feeling like the bones are displaced and is so painful I can't even put my foot on the ground.
So I am wondering if I need to try a different med like the new one Xeljanz.
The longest I have been one my meds is three months and then sick, I had double pneumonia in June, just was getting over that and fell with my crutches and broke my wrist and then because my immune system is so bad I had trouble healing and got an infection in my incision and was put on antibiotics for that and no RA meds, then just as that is healing , a week later I develop a kidney infection and have to take antibiotics for that.
So now I have been on antibiotics for over two weeks and they still can't get the infection under control.
And of course now I have been off my RA meds for over a month.
My RA is killing me again and all the other meds and problems.
There are for just a few minutes you think it just isn't with all the pain!
And then I remember my family , mom and dad, my kids and beautiful grand babies and I know that is why I keep pushing forward for either a cure or at least some relief.
I just get so scared sometimes, cause I am so weak, I have no muscle left, just skin hanging on my bones, my skin is so wrinkled , my arms and hands look like I am 90 yrs old , and I am so tired all the time and the chronic pain, I just wonder can I keep doing this, and I get very scared when I feel like I never get better, or always getting a cold and it turns into more.
I feel sometimes maybe I am just a big baby and not a strong enough person, then I get mad and I just keep trying to get pass this one more bad day!
I guess this is why I am here now, I have tried to find a local support group, what a joke, I would have plenty of help if I was a drunk or a druggie.
But there is nothing for RA!
I did find yesterday a site called RA Warrior.com at least she is tring to help.
Did you know that if you have MS and a few other things like that you are taken better care of and have more support . Ms and other health issues get $ 350 per person for funding and funding for RA is $ 25 per person, how wrong is that!
I know I am probably just rambling on , but that happens I think from being bedridden for so long, and I apologize for that, guess just glad there is maybe someone who remotely understands the pain and the islolation!
Does anyone know if getting a top notch doctor in the field or certain other ideas that would help please help me!
Thank you for putting up with my going on and on !
Thank you for any support or advice!
Hugs and prayers,