Didn’t mean to think I was saying Suck it Up. I just feel like that is what people around me are thinking.
I suffered from bad depression for 25 years and I had a very good come back for people that told me to just suck it up, but I can’t repeat it here.
I’m still trying to get my wife to understand that I can go to bed fine and wake up and can’t walk or move.
Any suggestions on getting some empathy from a wife?
There is also a youtube video here (part of the same UK campaign):
http://www.huffingtonpost.co.uk/liam-oatoole-/arthritis-the-nations-joi_b_17816658.html
The arthritis sufferers (unfortunately for us only OA and RA get a mention in the accompanying blurb) talk briefly about living with their condition while their families listen in. The fact they don’t know their families are listening seems a bit sneaky, but anyway it may be of some use to you.
The fact is that inactivity and PsA don’t mix well. But we’ve got to sleep. Someone here (okay, it was janeatiu, you twisted my arm) once quipped that you know you’ve got PsA (if you’re a man) when people can ask about your morning stiffness without sounding pervy. Maybe you could explain to your wife that rheumys ask about how long morning stiffness lasts precisely because we PsA patients invariably seize up overnight. And at worst morning’s got nothing to do with it, it can last all day. There may be other reasons why you wake up so immobilised such as damage etc. but perhaps one key explanation at a time will work. This is a hellishly difficult disease to understand.
Thank you. I so agree with the ‘torture’ element. But I can’t go back to steroids yet silversurfer until I know my bone density. Sadly the pelvic fractures are as yet unexplained as in I didn’t fall or suffer an injury so why did they happen? Presently my use of steroids as in leaching calcium from my bones and being post menopausal is the only answer. Still waiting for the dexa scan and indeed still waiting for the private providers to message me back on it too.
That made me smile Tamac. I now so, so, so want to know your ‘come back’???
As for those understanding that are closest to us, that can be a hard one. For me it’s just them watching me trying and failing again and again and again. And this summer thinking I was on my way only to find out I’ve two unexplained fractures in my pelvis. ‘They’ don’t like it, spout out the most amazing amount of lectures at times too. And when I don’t retaliate but simply just keep trying, and sadly failing, the penny has finally dropped, some at least. I do find though that it’s best to demonstrate an inability rather than argue it. But I agree with Jules_G - get your wife to watch that video. I think it’s powerful given this guy so wants to succeed. But fails…
Thank you @Jen75:blush:
Hey guys I made it to work today - most of which was spent having luch with my collegues. It’s just after 9pm and I’m so looking forward to my bed. BUT I did it. Biggest hugest smiley face!
Interesting that you all complain of morning stiffness. My rheumy expected me to have it, but I didn’t. I have never experienced that. Also, my fingers have never swelled. Neither Otezla nor Stelara helped my symptoms. I did get psoriasis lesions on my face after trying Stelara. I never had visible psoriasis before but now that I am off the Stelara I still am battling the outbreaks. Now my rheumy suspects that the weakness in my hands is due to cervical spondylitis. She says that could also account for my balance problems. I wonder if my PSA diagnosis is correct. Nancy J
cervical spondylitis is virtually identical to PsA just more descriptive as to location
It’s not an easy diagnosis to make, what with symptoms mimicking several other chronic diseases. But, it’s very interesting you didn’t have stiffness. Joint and muscle stiffness was one of my major symptoms that has been wiped out with Enbrel. My lower back felt like it was going to break in half when I changed positions in bed and getting out of chairs, etc…by the time I got on Enbrel, pretty much every joint would “lock up” and I wished it would be as easy as applying oil to my joints (like the tin man) to loosen them up without so much pain!
So sorry you’re still looking for answers and trying to find something that works for you! I hope your rheumy figures this out and you can move forward with effective treatment. Good luck!
Ooops, also, cervical spondylitis could definitely cause your hand symptoms…have you had an MRI?
Hi there @NancyJ, just so you know you are not alone in this… I don’t have morning stiffness either… although I do have some stiffness in my ankles, but this is consistent… as in all day, every day… for the past 2 years… at times my hands do feel a little stiff too, but that wears off fairly quickly, and, only sometimes, my hips get a little stiff for a short while (which is most likely due to the OA that’s in them).
A recent MRI has shown small effusions in the left ankle (they only scanned that ankle) and 4 dodgy tendons… am waiting to hear back from my rheumy about her interpretation of that, but from what I gather that may all be from PsA or some other inflammatory arthritis.
At this stage my diagnosis is inflammatory arthritis, possibly PsA, that might change as symptoms progress… I guess only time will tell.
From what I understand, although morning stiffness is common in PsA not everyone will experience it, or at least not in the early days, for some of us it can take a long time for some symptoms to become apparent.
Keeping my fingers crossed that they hit on the right treatment for you, one that will provide significant relief, ASAP.
Hugs!!
No, I’m not in the early stages of the disease. I am 74 years old and becoming rapidly crippled. I have never had an MRI, but I am waiting for results from my neck X-rays. From what I am reading about cervical spondylitis, the main treatment is pain control until nerve damage begins. Then the only treatment offered is surgery. I am losing the use of my hands due to what I have been calling “weakness”. I don’t know if surgery would reverse or stop this symptom, but I do know that surgery is extremely hard on me. I had a series of five knee replacement surgeries (so many were due to infections) several years ago, and I went from active middle age to crippled old age in just two years. I have never recovered my vitality. So I am not thinking that more surgery would be good for me. I guess my rheumy isn’t thinking that either, since she seems in no hurry to see me again to review my neck X-rays. --NancyJ
You really have been having a rough time of things… I really do feel for what you have been/are going through… It really is tough.
I might have missed this, but did you have the x-ray already? Or are you waiting for it? I ask because if you have already had the x-ray perhaps you could phone your rheumy’s office to see if the results are in, maybe get them to send you a copy of the report… at least that might give you a gateway to moving forward with things (whatever that might mean) a little quicker… just a thought.
All the best with getting to the bottom of just what is going on!!!
Oh, and just a quick thought… It would seem I have probably had this “inflammatory arthritis” hanging around for over 40 years now, mostly in the background and waffling around the edges, suspected diagnosis of PsA only reared it’s head about 2 years ago. Although I like to consider myself lucky in the sense my pain levels are rarely crippling, perhaps the meds are at least helping to keep the worst of it at bay.
I wish you nothing but the best of luck for where things go from here for you!!! This a horrible journey!!! Hugs
I can understand how you must feel. I have leg weakness due to spinal stenosis and nerve damage in my lower back…it’s not a pleasant thought—I mean, surgery—IDK if I could take that risk. I don’t blame you for your pessimism…I’d be pessimistic, too!
I had the X-ray on my way home from my lat rheumy visit. But I won’t see her again for three months. I really don’t think anything can be done for me at this point. --NancyJ
@NancyJ… hmmm… 3 months seems like such a long way off when you are feeling sooo bad 
There is no harm in phoning in and asking if the results are in and what they mean… if it gets things moving or not, you won’t know till you ask 
At least you might get to find if there is anything they can do or not… you may be quite different than me, but I always find that knowing where things are is better for me than sitting in the dark and wondering. Of course, it’s entirely up to you
It’s just soo awful suffering!!! Hugs
I forgot to ask the radiology department to put my X-rays on a disk so my rheumy could interpret them in her office. So I will have to stop by there to get this done sometime when I am back in that area. --NancyJ
Idea on how to tolerate MTX:
I couldn’t tolerate MTX until I started taking very small doses and working up to the prescribed amount. Now I don’t have any side effects.
I hope this helps!