Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group whats going on

I have not posted for a while as I have been quite ill.

Recently (over the last couple of weeks) at about 3pm I have started with a pain between my neck my shoulder blades and the left side of my chest, then a pain on my inner thighs and I could only walk if I shuffled, my legs feel like they are made of lead.
I have waited until about 9pm when I have used my Voltoral 100mg suppository which has taken most of the pain away within 30 minutes, the reasoning behind taking it so late is that I can only have 150mg a day and I need to have some form of 'restful' sleep.
what concerns me is that this usually happens (but not to this degree) when its cold and damp, and at the moment we are having decent sunny weather. does this mean that my AS has taken a downward spiral?
I am as always putting a brave face on it but my kids can see whats actually going on by looking in my eyes.
any suggestions, is it a blip or is it what I am to expect continually?
the highlight of my day is taking my dog for a long stroll in the mornings as it means I get out and exercise.

Janetx

Hi Janetx:

If the Voltoral is a Diclofenac or Voltaren-based NSAID, there is a possibility that your AS is progressing. This drug was extremely harmful to me in pill form and there is a reason for an upper limit that can be safely taken via any method.

You may not have noticed any digestive distress, but I hope that you are being monitored for occult blood.

I hope that you are not on a downward spiral, as I was; there are certainly many better drug choices and all are many times more effective when adjunct to dietary measures.

Best of Luck to You,
John




"On two occasions, I have been asked [by members of Parliament], 'Pray, Mr. Babbage, if you put into the machine wrong figures, will the right answers come out?"
Charles Babbage

many thanks for this.
the diclofenac pills are next to useless.
its problematic for me in terms of getting the right painkillers, I have had different sorts over the years, indomethacin gave me stomach problems after a while, but I had hoped that with the suppositories I had finally found something that worked, but I am still worried about taking anything for long term use. the GP is very good, she appears to know what AS is, but when I was recently in hospital after a fall, the casualty doctor asked me what AS was.as I said I didnt think it appropriate for them to put my arm in a cast when they were not sure if it was broken or not.
oh well tomorrow is another day and I have work to catch up on.
Janetx

Hi Janet,
Sorry to hear you're having such a rough time. Sounds like you're in a flare. Who knows if it's something that will continue or not. We're all different and it depends on how aggressive the AS is getting.
I know you've had As for some time now, but you didn't mention if you have a rheumy or not. Sorry, I am a little slow sometimes and miss things now and then. I ask, because it sounds like that's who you should be dealing with right now. They're usually better at finding the right things for pain and aren't as afraid to prescribe as a GP. I know I went through everything under the sun as far as pain meds. Was either allergic or bothered my stomach. Finally found the right ones for me and been taking them for almost 4 years now. It gave me some of my life back. Was hesitant to try them at first, but life got so painful and limited that I became desperate.
I know what you mean as far as your kids seeing and knowing what their mom is going through. Know matter how hard we try to keep them from seeing the pain, we're unable to pull it off at times. They are smarter than we think and sometimes know us better than we know ourselves. Luckily my kids were in their teens when AS hit me hard.
It was still hard on them, but they were very understanding, although none of us truly understood at the time what was going on. How mom was in bed one day..not being able to move, then be up riding a bike with them the next was something we all tried to figure out.

Glad to see your here and posting again.
Hope the pain lets up soon and you start feeling better.
Hugs,
Lisa

Hiya,
I dont have a rheumatologist, I did originally when it was diagnosed but now its down to my GP to monitor my condition. Which in fairness to her she does, but I dont go to her often enough, I would like to be able to ring her when I am in absolutre agony during the night, because in the morning when I have finally managed to move and get out of bed, and walk very slowly downstairs, my bones begin to work, so by the time I could get to see my GP I am in moderate pain but not agony, and trying to describe the pain gets more and more difficult.
I say I feel like a thermometer and that all the mercury has fallen to the bottom and when I turn its as if the mercury is moving slowly to the other side of my body. People dont understand do they?
Well its 8am Thursday morning and I have been up 3 hours so maybe I should motivate myself and take my dog out.
Thanks for everything.
Janetx

Janet,
you should see a rheumy. If there isn't a decent one at Hillingdon (wouldn't surprise me) ask for an appointment at UCLH which is where both I and my brother go. They have a good rheumy department and will consider prescribing the latest DMARDs.

And what's he then that says I play the villain
When this advice is free I give and honest

excellent advice.
Hillingdon Hospital had one but they left, I went to ealing and she was next to useless. maybe I will ask for a referral to UCLH and see what happens.
thanks again.
Janetx

Janet,

Sounds like a bad flare, and they can get difficult to get out of so please ensure you go see the rheummy.

You seen your GP lately?

David