← Return to Chronic Pain members - Welcome, please introduce yourself

Discussion

Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 8 hours ago | Replies (7067)

Comment receiving replies
@nanke99

hi! forgive me for being redundant, but i would love to get some more direct stories from people about their experiences, as i'm really having a hard time coping! i just don't know what is next or where will i be in 1 years, 5 years, 10 years? i was diagnosed with RA & Fibro in last year and still fiddling with meds. currently on 2000mg sulfasalazine and 60mg cymbalta daily. they had been working but seem not to be so much anymore. i can feel my RA progressing, having difficulty squeezing shampoo bottle some days, pain is spreading to more joints & sometimes the pain at night is so bad (knees) i am literally writhing and crying in pain. and then it might not be moderate for a few days... i can barely climb a flight of stairs, and small amounts of activity leave me wasted. it seems like i have flares every other day. will i be confined in a wheelchair in a few years????

here are a few questions:

what were your first symptoms (either RA or Fibro) and how long before you were diagnosed?
what is your worst symptom/s?
are your RA symptoms symmetrical?
if you have joint pain, where and how would you describe it?
are you on disability, or are you able to work?
what medications have you taken that didn't work, what do you take that does work, and what are your side effects?
have you suffered any liver or kidney damage from meds?
how often do you have flares?
what triggers them and how long do they last?
do you have any inflammation of any organs, and if so, how has it manifested?

thanks everyone!!!!!

Jump to this post


Replies to "hi! forgive me for being redundant, but i would love to get some more direct stories..."

Hello @nanke99,

Thank you for sharing your symptoms; I'm so sorry that you are going through so much pain. I've moved your discussion to the Chronic Pain group, as you will see that there are so many members who face the same frustrations as you.

I'm tagging @tbeckys, @blindeyepug, @ladyjane85, @jeannen, @sandytoes14, @swamma08, @dante, @irene5 as I'm confident that they will be able to address your concerns.

Here is another conversation taking place about ways that other members of Connect cope with the pain, http://mayocl.in/2effi2l.
nanke99, please do not feel that your questions are redundant; stay positive, and continue to search for answers.

hello, and thanks. i appreciate your concern about chronic pain, but i really need to get answers about RA and Fibro specifically, since that's what i am being treated for. i will be most likely switching meds soon and need to make decisions about that. i need input about what my expectations should be, which may help with frustration. can my post be in BOTH sections?

Hello @nanke99. I apologize about getting bounced around a bit on here. Here is what I suggest we do. Like Kanaaz suggested, I recommend posting your above post to the active discussion about fibromyalgia here, http://mayocl.in/2effi2l. In that group you will meet many other members who are experiencing things very similar to yourself. They may be able to help you with some of your questions regarding Fibromyalgia.

I was not able to turn up a central discussion centered around Rheumatoid Arthritis, but many other members have talked about RA in the past. Here is what I think we should do. I encourage you to start a new discussion in the the Autoimmune group specifically for your questions regarding RA. You can do that by going to https://connect.mayoclinic.org/group/autoimmune-diseases/ and then clicking on the START A DISCUSSION box. From there you could start a whole new conversation where other members could come to discuss Rheumatoid Arthritis specifically. I think this would be helpful for not only you but the Connect community as a whole.

If you have any questions, comments, or concerns about this process, please do not hesitate to send me a personal message by clicking on my name and then the envelope symbol in my profile. Then you could send me a private message between just you and I. We will get you connected other members!

Hello nanke99

I also have fibro, RA and psoriatic arthritis, raynauds syndrome, chronic rib pain and chronic pain syndrome all of them cause pain but I understand your desire to discuss meds etc. I tried and failed the following: methotrexate, (multiple times) Embrel, Arava, humera, stellara, Cimzia and a couple I can't even remember. I am now on a monthly infusion of Remicade plus prednisone. I was diagnosed in 2008 and worked until 2015. Overwhelming pain issues and fatigue had me stop working coupled with sides effects from juggling drugs. I have been on pain meds since 2009 and don't know if I could function without them. I was just approved for medical marijuana and am trying to wean off a couple of my prescriptions starting with my sleep med. I currently take hydrocodone and tramadol for pain. I use a cane for balance and a travel wheelchair for longer trips to mall etc. I walk behind the chair but have a place to sit when I need to. My hubby will push me if we are in a hurry. I plan to get a scooter. Doctor prescribed one but insurance denied it. Uggggh. My symptoms are generally symmetrical with the arthritis and the fibro is all over pain like I was beaten with a bat. I used to say I had more good days than bad but right now it's about 50/50. I am working with cognitive behavioral therapist to help me see more positivity and lessen the negative self-talk most of us with chronic illnesses have :-). Don't know if my reply helps or not but I thought I would share. I truly hope you find a med to help you. Oh, and my liver occasionally is high and I don't drink so it must be the meds. Good luck!

Welcome @jerseygirl926. I hope you'll also join the discussion in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

Your reply certainly does help. Your cognitive behavioral therapy results come shining through in your message. It can be a challenge to see the positive while managing relentless pain. What tool or practice have you learned through CBT that helps you the most?