Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I have been in nonstop pain for so long and things just keep getting worse. Nothing is helping. More and more joints hurt and swell, fatigue is crushing. Can only function for 2-3 hrs at a time. Take ambian to go to sleep but still am awakened by pain around 2am til 4. I started with mtx that made my RA 100 times worse...no exaggeration . Went to sulfasalaizine, had bad reaction to that, then Arava. Been on it 5 months and it doesn't seem to do much. Did humira for 2 months, but things were still getting worse, so changed to embrel. Taken that for 2 weeks and feel like a truck has ran over me. Pain is worse, joints are worse, fatigue is worse. Rheumy says the embrel seems to be causing a flare, so stop that and start cimzia. Really starting wonder if anything is going to work and if things will ever get better instead of worse.... Had bone scan that shows joints being damaged in hands, wrists, elbows, shoulders, hips, knees, and feet. Really hard to remain faithful that things will get better. I'm on 75mc fentanyl patch with norco and tramadol on the side to bring the pain down to a 7-8. Ugh
Holeyschmoley, I almost cried reading that. I feel really bad for you. I know the despair and desperation of trying to get treatment but you are trying for treatments to work.
May I be so bold as to first suggest that you see your pain management physician to let him/her know that you have permanent damage, the current Rheumatological treatments are not working well as of yet, and the current pain regimen is only bringing your pain levels down to a seven or eight.
Your pain management physician should really be focusing on trying to bring your levels down to a two or three. There has got to be a long term medication that will work better for you than a Fentanyl patch and you could still take something for the breakthrough pain.
Secondly, please hold out hope that one of the anti-biologics, in use or coming down the pipe-line, will be useful to you. Or, perhaps a combo of them will do the job.
I wish I could help more. Please hang in there.
Worried for you,
TheWino
My goodness living in 7-8 range is exhausting.
As long as there are options left don't give up hope.
We don't always find the right treatment as quickly as we'd like but a little hope is better then none.
I'm hoping you find something soon.
Has to be tough & my heart goes out to you.
Sammy
Nonighrshades - ditto.
51% - thanks for giving me a potential drug to consider if I become allergic to too many foods and meds to avoid them any longer.
I am SO sorry to hear all that you are going through. I know this sounds selfish, but reading your post makes me feel better to know that I'm not alone!
I haven't been through as much as you have, but I am emotionally & physically at the end of my rope. Have been battling depression and suicidal thoughts for some time now.
I don't have any advice to give, but I am sending thoughts of comfort your way! I really hope your Rheumy finds something that works well for you soon!!!
maybe it's the tnf repeating thing your doc is doing? BUT you have only been on 2 and the second for 2 weeks at that...2 weeks not so long. not sure if your doc will pull you off after 2 weeks.
I have not had the great success that others have had on Orencia the past 2 years. our bodies are all individual in response. but i can not complement with mtx and i interrupt for lung infections, though not as many lung infections as when previously partnering up with mtx.
let us know what your doc says
i am thinking of you
Ros