I'm Back! OA and AS and other strange acronyms!!
chrissiewissie
Member Posts: 75
Hi All
I've been off the forum for a while, there's been a lot happening lately. I got made redundant in November and was off work for 6 weeks before I luckily found another job. The money is awful though, a lot less than I was earning previously, but on the plus side, it's only 10 minutes from my house, so I don't have a 3 hour round trip every day now!!
My OA has definitely got worse of late, I have it in both big toes and the joints are cracking and hurt all the time now, rather than just when I'm walking, which is getting me down a bit.
I had an MRI in November to see if I have AS in my back. I'm still waiting to see my rheumatologist to get the results of the scan. I'm finding it so frustrating that they didn't just send me a letter or something to say what is going on with my back. I'm stiff and sore all the time, and getting up on a morning I resemble an 80 year old, not a 30-something year old. I finally managed to get an appointment to see the consultant in April, which is 6 months after my scan!! I rang his secretary about a month ago to try and bring it forward and managed to get an appointment 20 odd miles away on 21st March to see him at a different hospital.
I'm feeling really scared about it.
Most of me really wants to know what is wrong with my back so I can face it head on and deal with it, as the not knowing is driving me crazy. A little bit of me is almost preferring to live in ignorance though lol!
I'm trying to stay really positive and not get too down and think of what may or may not happen with my body but it's getting harder I have to admit. My husband tries but doesn't always understand I think. Although he was lovely last night when I got up at midnight and cried because my feet wouldn't stop hurting and I couldn't sleep.
I went to see my orthotics dude and podiatrist a few weeks ago. My soft insoles weren't really doing much so he has made me some solid carbon fibre insoles to go under the soft ones. With all these extra things in my shoes I can't fit my feet in and I'm already wearing size 7 trainers even though I'm apparently a size 3-4!! I'm a bit unsure about these carbon fibre things anyway. He said something about we'll get your big toes to fuse together and that should stop the pain. I just nodded and didn't say anything and then when I left I suddenly thought, how will I be able to crouch down, or walk up hill or do anything really? I thought the point was to try and keep the joint moving? So confused and scared to use these things to be honest in case it makes my mobility even worse.
If you've made it this far down my rambling, then I'm grateful and apologetic at the same time! God, I really am a moaning Myrtle today!! :roll:
Any advice on any or all of the above would be massively appreciated....
C xx
I've been off the forum for a while, there's been a lot happening lately. I got made redundant in November and was off work for 6 weeks before I luckily found another job. The money is awful though, a lot less than I was earning previously, but on the plus side, it's only 10 minutes from my house, so I don't have a 3 hour round trip every day now!!
My OA has definitely got worse of late, I have it in both big toes and the joints are cracking and hurt all the time now, rather than just when I'm walking, which is getting me down a bit.
I had an MRI in November to see if I have AS in my back. I'm still waiting to see my rheumatologist to get the results of the scan. I'm finding it so frustrating that they didn't just send me a letter or something to say what is going on with my back. I'm stiff and sore all the time, and getting up on a morning I resemble an 80 year old, not a 30-something year old. I finally managed to get an appointment to see the consultant in April, which is 6 months after my scan!! I rang his secretary about a month ago to try and bring it forward and managed to get an appointment 20 odd miles away on 21st March to see him at a different hospital.
I'm feeling really scared about it.
Most of me really wants to know what is wrong with my back so I can face it head on and deal with it, as the not knowing is driving me crazy. A little bit of me is almost preferring to live in ignorance though lol!
I'm trying to stay really positive and not get too down and think of what may or may not happen with my body but it's getting harder I have to admit. My husband tries but doesn't always understand I think. Although he was lovely last night when I got up at midnight and cried because my feet wouldn't stop hurting and I couldn't sleep.
I went to see my orthotics dude and podiatrist a few weeks ago. My soft insoles weren't really doing much so he has made me some solid carbon fibre insoles to go under the soft ones. With all these extra things in my shoes I can't fit my feet in and I'm already wearing size 7 trainers even though I'm apparently a size 3-4!! I'm a bit unsure about these carbon fibre things anyway. He said something about we'll get your big toes to fuse together and that should stop the pain. I just nodded and didn't say anything and then when I left I suddenly thought, how will I be able to crouch down, or walk up hill or do anything really? I thought the point was to try and keep the joint moving? So confused and scared to use these things to be honest in case it makes my mobility even worse.
If you've made it this far down my rambling, then I'm grateful and apologetic at the same time! God, I really am a moaning Myrtle today!! :roll:
Any advice on any or all of the above would be massively appreciated....
C xx
0
Comments
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I thought I recognised your name - it's nice to hear from you again. I can't help too much because I have PsA in my toes, ankles and knees, and that has led to OA in those joints too - kneeling and walking at length anywhere are long-lost skills. I have hospital-issued orthotic insoles for my flat feet, they make walking more painful so I guess that means they're helping. :roll:
Well done to you for finding another job: OK the lack of money is not ideal but surely the lack of commuting is a bonus. I work at home - now that journey is a doddle! What do you take for pain relief? I know that paracetamol etc doesn't get rid of all of it but it does dull the sharper edges, thus making life a little more comfy. DD
PS I forgot about the AS side of things: it is posible to have OA plus an auto-immune sort of arthritis, it could explain your back trouble but let's hope it isn't that.Have you got the despatches? No, I always walk like this. Eddie Braben0 -
Hi Dreamdaisy
Thanks for the quick response!! I take paracetamol and tramadol when it gets really bad. In a cruel twist of fate, I'm actually allergic to NSAIDS, they bring me out in horrific hives, so I'm pretty limited in pain relief really! I only like taking tramadol when the pain gets really bad as they're pretty strong, so I try and just take paracetamol regularly through the day.
I have flat feet too, the insoles are supposed to raise my arch a little and make me walk properly but yeah, they do hurt! Forcing your feet into a position that they used to be in but aren't any more is bound to hurt I suppose!!
Not having that long commute is wonderful, I'm still exhausted at the end of each day but not to the point of near death lol!! Although, I'm still walking to work most days to try and get some exercise in. I'm going to cancel my gym membership as I can only really get on the upright exercise bikes these days so it seems a big waste of money.
How are you feeling? xx0 -
I have co-codamol 30/500 and I keep it to about four per day. Mr DD was very ill recently so I had to up things to slow-release tramadol and that helped me stamina-wise for those few ghastly days. I would save your money on the gym and maybe invest what you save in stuff you can use at home to help maintain your fitness levels. Tiredness? I would like to know what awake feels like, each day is an on-going plod through the never-ending sludge of life. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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That's what I'm thinking. I'm paying £30 a month and I last went in November and lasted less than 12 minutes before having too go straight home again because I felt so bad!! Considering buying an exercise bike to use at home.
C xx0 -
Hi C
Its good to you back..but sorry things aren't good for you...and dont apologize for the rant ..like you say its much easier talking to us than family...backs are so complex I have had 2MRIs on mine and there are quite a few things showing up...but they are not sure which one is causing the pain or most of it ....and your poor feet...its awful when you cant get your shoes on....I do wish you well with it all...sorry Im not much help...but I am a good listener xxLove
Barbara0 -
Hi Barbara
Thank you for your reply, it helps so much when you talk to people who just understand exactly what you're going through and who take the time to give you encouragement and empathy.
C xx0 -
Buying a bike sounds much more sensible because that way you can exercise as and when you want and not feel under pressure to over-do things. Start saving those pennies! DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hello again, chrissiewissie. Good news on the job front - well, at least on the lack of commute.
I'm sorry you seem to have been given the runaround with this consultant's appointment. They seem to have done things a strange way but at least you now have your appt. for April. Waiting and wondering is the hard bit.
I don't think anyone really understands until it hits them, least of all husbands Yours seemed to come up trumps when you really needed him though.
I've got joints that have fused and there is very little pain in them. I'm not sure what they stop me doing though as the unfused joints (Mine's RA) stop me doing stuff too :roll: The idea behind keeping joints moving is to keep the muscles strong and supportive as that means it hurts less. If you've doubts about your insoles I'd go back to the orthotist and ask. He's the expert. Maybe you could just speak to him over the phone.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0
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