How do others deal with pain and limited mobility – Help!

As5567

I have been having a bad time with my RA and AS (ankylosing spondylitis) for around 9 weeks now. I have never been as bad as I currently am now, my back feels permanently bent forward, unable to straighten out my knees and I find it very hard to move my legs as I feel that both of my hips are about to snap/click but they won’t. At the moment I basically can’t walk and find this very frustrating. I take 90Mg Dihydrocoedine Morning and night but find they don't even touch the pain anymore. I'm going to try see my rheumatologist this week but even getting to the hospital will be difficult as I cannot drive in the state that I am and all of my family that are local work full time. Even if I do get to see the doctor I have a feeling he will want me to have IV steroids for 3 days in hospital which is an option that often really upsets me coz of the weight gain associated with them and the fact my face blows up like a balloon and red for months after.

I think the lack of sleep also doesn’t help. The last few nights I have been falling asleep around 8AM after being up all night in pain, I find that at the moment I can’t sleep for more than 1-2 hours at a time without waking up with extreme cramp in the top of my back and side of my ribs.

Would be nice if any of you could give me any sort of tips that work for you, even if you think they're silly it’s surprising what can work!

I'm due to take my humira tonight so I'm hoping this will give me somewhat of a break by the morning.

Thanks for reading,

Tom

LignumVitae

You are in a bad place! There's nothing worse than the cycle where pain disrupts sleep and so fatigue and general worn downness makes pain worse and sleep even rarer. If you can get in and out of the bath I often find a good warm soak helps, failing that, a nice warm shower. I don't use pain dullers because I find they do just dull pain and eventually stop doing that. Heat packs, hot water bottles and other such devices are often to be found stuck to bits of me in bed. A wee dram sometimes helps too and if I need to I sometimes vary my bed times so I will snooze, get up and read or drink hot milk, snooze, watch crap TV, snooze, stretch - anything which might help in the short term to give me at least a bit of a night's sleep.

As for getting to hospital, it may be too late to book for this week (possibly not though) but you may qualify for Patient Transport Services. It's best ringing the rheumatology department to discuss it with them. Definitely worth a shot though if it is that or missing your appointment.

Good luck, I'll be thinking of you at 3am, my current wake up time! The above are generally silly ideas and they don't always work for me but they do sometimes.
LV xx

As5567

LignumVitae wrote:

You are in a bad place! There's nothing worse than the cycle where pain disrupts sleep and so fatigue and general worn downness makes pain worse and sleep even rarer. If you can get in and out of the bath I often find a good warm soak helps, failing that, a nice warm shower. I don't use pain dullers because I find they do just dull pain and eventually stop doing that. Heat packs, hot water bottles and other such devices are often to be found stuck to bits of me in bed. A wee dram sometimes helps too and if I need to I sometimes vary my bed times so I will snooze, get up and read or drink hot milk, snooze, watch crap TV, snooze, stretch - anything which might help in the short term to give me at least a bit of a night's sleep.

As for getting to hospital, it may be too late to book for this week (possibly not though) but you may qualify for Patient Transport Services. It's best ringing the rheumatology department to discuss it with them. Definitely worth a shot though if it is that or missing your appointment.

Good luck, I'll be thinking of you at 3am, my current wake up time! The above are generally silly ideas and they don't always work for me but they do sometimes.
LV xx

Thanks for your reply. I will try a hot water bottle tonight to see if that helps in any way. Hospital transport for me is unlikely because I attend a hospital that is not in my local area. I have been going to the same hospital for my Arthritis since I was a child as they had the children’s hospital and department, I did swap doctors to my local hospital but found them to be useless so I'm back in the old place which is around 40 miles or so away.

LignumVitae

Hey Tom,

How did you sleep? I hope you got a good night in. I think you may still qualify for PTS, it is worth checking out - after all if you are able access the services at a distant hospital then you should be able to get help if you need it getting there!

Hope you had a better night

LVxx

maria09

Hi Tom
I've been through the poor sleep pattern for 3yrs
I told my rheumy so the put me on a different regime of pain relief and amytriptyline at a small amount but does seem to help
I have more good nights than bad
It has taken awhile to find the right balance but its worth it
Don't be afraid to tell them what's helping and what's not
Good luck
Maria

stickywicket

I hope the humira helped last night.

I think you need that appointment right now, Tom, however you get there and whatever the result - even the dreaded steroids. Sometimes the bullet has to be bitten.

I agree with LV that it would still be worth a go for Patient Transport. Or, maybe you could find someone willing to take you among friends or neighbours. A taxi would be expensive but possibly worth it if things are so bad.

If you can't get to see your rheumatologist, maybe the GP could tweak your pain meds a bit?

As5567

LignumVitae wrote:

Hey Tom,

How did you sleep? I hope you got a good night in. I think you may still qualify for PTS, it is worth checking out - after all if you are able access the services at a distant hospital then you should be able to get help if you need it getting there!

Hope you had a better night

LVxx

I got a reasonable days’ worth of sleep even tho I was awake until 9AM, much better than I have for the last few days! Hopefully I will be able to sleep tonight as I made sure I didn't sleep for too long today so that I'm extra tired for bedtime tonight.....need to try and get back into some sort of normal sleeping time pattern.

As5567

maria09 wrote:

Hi Tom
I've been through the poor sleep pattern for 3yrs
I told my rheumy so the put me on a different regime of pain relief and amytriptyline at a small amount but does seem to help
I have more good nights than bad
It has taken awhile to find the right balance but its worth it
Don't be afraid to tell them what's helping and what's not
Good luck
Maria

I'm not sure that I need anything to help me with sleep just yet, when I'm having a good week I can normally sleep with only waking up during the night a few times. I think the lack of sleep at the moment is just down to the amounts of pain and stiffness I have.

As5567

stickywicket wrote:

I hope the humira helped last night.

I think you need that appointment right now, Tom, however you get there and whatever the result - even the dreaded steroids. Sometimes the bullet has to be bitten.

I agree with LV that it would still be worth a go for Patient Transport. Or, maybe you could find someone willing to take you among friends or neighbours. A taxi would be expensive but possibly worth it if things are so bad.

If you can't get to see your rheumatologist, maybe the GP could tweak your pain meds a bit?

I think the humira helped slightly overnight, no big changes in how I feel tho.

I phoned the hospital today and my rheumatologist called me back and we had a chat on the phone, I'm going to see him on Friday to see what he can do for me. My Mum is now able to take me on Friday (YAY) so that has made me feel better knowing I don't need to worry about how I'm going to get there. As for seeing my GP I did try first thing this morning around 8AM before going to sleep and as always they told me I'd need to make an appointment or go to A&E. My doctor’s surgery is not the best.

As5567

Just a small update, I finally got a decent nights worth of sleep lastnight and only woke up once! 10pm - 2 30am then 6am - 10am. Feel slightly better today although I did wake up on my side with a very sore hip. Going to attempt to eat a full days worth of food today seems my jaw feels normal for once

stickywicket

Go for it, Tom Make the most of the better days. Good news about rheumatology.