Hi Tina, basically every single joint hurts. Almost all the time. There are joints that hurt and there are others that HURT. Can't sleep more than 5 hours a day by now. Just wake up and can't fall asleep again because of the pain. Was on Humira and Enbrel, neither helped with pain or deformation. If at all, they made it worse and other side effects were intolrerable. Was carrying the chronical pain syndrome diagnosis for years and diagnosed with fibromyalgia a year or two ago. RA was first diagnosed about 11 years ago, had sympthoms as a child and then since my mid 20th, then they switched the diagnosis to AS and then to psoriatic arthritis or auto arthritis. Nothing is too conclusive for a concrete diagnosis. Tried raw vegan diet (still don't eat diary products or meat or eggs, occasionally fish) which initially improved the sympthoms but which stopped to work after a while. Saw 6-7 Drs thus far, so frankly, I don't really believe that they can help me... Didn't see a dr since summer. I hope that your case is different!
Anna I appreciate you telling us what is going on with you. It is the most exhausting debilitating humiliating experience and I at least intellectually understand it can get a lot lot worse. I too am not going to give up on some good things in the diet and lifestyle, the medicines if they work ever are an aid. Hope a great aid to some (and so it seems). Kay
Thanks for the info. Funny you talked about expenses. I may have to switch insurance plan and I'm scared to see what may happen because of my meds. Talk to you soon, Jess
I don't have any insurance....or pension...having to use my savings here...Dunno what will happen when that runs out...Phew...G
Ooooopppps just had a nasty mishap. I have a very large Rottweiler,,,she is almost three years old. Got after we had two home invasions in as many months....scary...Anyway I wandered out to the back garden to check if she had water as it is terribly hot here today....and she wanted to come in to get away from the heat I guess....So I let my heart rule my head....let her in and she jumped on me, twisting my right knee...can't walk on it atm....I guess it was my own fault...so back to bed in a bad mood now.
Thank you for all your replies. You are all much too kind. I hope for nothing but the best for everyone. Have any of you gotten Disability for your AS? I'm trying right now and waiting for an answer. I sure hope I get approved as I am broke as broke can be. I keep wanting to go back to work to make some money but there is no way I could hold down a job. There is way too much pain, sleepless nights, anxiety, depression and huge lack of focus and concentration. I hope u all have a great day tomorrow. Thank you for listening.
Tina.
You are not wrong!!!! Tks for listening too.
Hi there Tina, I'm same as you with this struggle. ..Ask your Dr..Lyrica 150mg helps me get a decent nights sleep,- it isn't a sleeping tablet but muscle relaxant. As I have ankylosing Spondyloarthritis stage 1-2 in one hip and stage 2-3 in other hip and because of fibro flares being present so consistently over past 8 months (occasionally disappears but not for long ) I'm also not employable because depression and fibro flares hits me when I don't expect it and intensity and length is variable so as a result am as broke as broke also.
I'm told I'm shortly to get some income protection money and also small amount for partial disability for a while.
I can still walk but not very far sometimes and don't look sick when I go to Dr. Takes a lot of mind work sometimes to front up to public sometimes. That's fibro for ya!
For past 6 months I have been worrying about how I'm going to get by so looking for the short bit of financial relief.
I've still got to work out what I'll do in the future to generate some income. I've had 2 shots of humira now over past month and felt some relief already. Really hope it works for me so spinal fusion can be prevented. Once rheumatologist is happy that this is working , he said he will try to deal with fibro flares. I've learnt that cymbalta helps many fibro sufferers .
Good luck Tina 🌴🐫🐸🐥🐾🐞
Hi Deborah,
Sounds like fibromyalgie to me as its what's been happening to me now 8 months.
I was finally diagnosed with AS not even 2yrs ago and fibro has decided to jump aboard.
It will be helpful for you to go to the forum here on fibromyalgia and you will learn heaps if you tick the box at the bottom left to keep up with conversations...even google the topic.
Good luck Deborah. 🌹🌷🌹🌷🌹🌷🌹🌷
Michael, it sounds like fibro to me.
I have AS- diagnosed now nearly 2 yrs and the hardest part about that was accepting it but dealing with fibro has been much harder for me as there are so many triggers that cause the fibro flares and I find cold weather and stress are my most common triggers. Fatigue, lack of sleep at night, brain fog, poor concentration and memory are few more but not so bad since having lyrica and endep prior to going to sleep. Lyrica is muscle relaxant and endep has small amount of antidepressant in it as does sulphazaline.
Panadol osteo helps the pain 6am, Noon and 6pm. If I don't take it, life is not fun quickly and very hard to get back to capable plateau.
Deborah, when you were on Humira , did u use epi-pen or syringe and did you ice area before doing legs or did you find it didn't really hurt that much more than stomach area?
I have my third shot tomorrow.
Definetly not one of your best days. Stay positive even in times like this, it was an ill-placed thank you on her part. The weather in NJ, went from 50 to 75 in one day. I was feelin' pretty, well ok...Then the weather started changing around 10:30am on wed.( sad that I noted the exact time), my right arm, which is pretty messed up, swelled up. Felt like an over-inflated water ballon in 15min. So when I got home it was meds, shower, eat, CRASH. Seems like we are on a roll Gloria. Feel better.
I would love to know if you get it or not(disability or even partial). I'm working but my lunchtime consists of me passing out on the floor of my minivan for 45min. Cause I average 2-3 hours of sleep a night and by lunch I can't focus or stand up. The cycle ends up leaving me almost catatonic by friday. Don't know if I can does this, or for how much longer. Best wishes!
Everyone may not agree to this one. But Jillian, I had a C5-C6 spinal fusion. I went bone on bone. It still hurts because the nerve between those two vertebrae is damaged not by the fusion, but because It should have been diagnosed 25 years ago. Yeah it sucks, long recovery but I wouldn't be so scared of it, It was a big help on my end. In the long run I can actually say it was worth it. I could not imagine where I would be if I opted out of it. Just 1 opinion, but maybe, if you have to do it. You can look forward to like results.
Feel a bit better today...mood is good anyway..just wish the knee would follow suit. My neurologist is coming to my house tomorrow...she is a great friend to me. So she can check my out for free...lucky me. I'll write a list of complaints I have before she comes coz normally when we get chatting I forget what I wanted to talk to her about....duh senior moment. Hope your own style of therapy worked for you...and you feel better....gentle hugs..G
I know what you mean I have to keep a journal. When I go to the doctor i get all wacked out and forget half of what I should be telling him. Take care, talk to you soon.
That is how I feel too. Eventually I just had to stop working. It is no fun at all that's for sure. Take care. Hugs
Ta for that Indy!
Thanks, Jill
My shoulders and elbows are horrendous with my AS too!!! As well as knees, ankles, toes and back.
Glad its not just me but sorry for your pain! I can't offer any advice on how to cope I'm afraid but you're not alone!