Continual flare ups!

charrisse

I am now finding that my back pain is getting so very bad and each day I do not know what to expect until I try to get out of bed. Sometimes the pain can be there when I wake up which is very bad then but most times when I am struggling to get to my feet the pain will gradually increase and I am left in absolute agony for the rest of the day.
I have ankylosing spondylitis and arthritic complications as well. I take one Meptizanol, two Paracetamol every four to five hours and sometimes a 500 Codeine as well, plus.. on those very bad days, 2.5mls of liquid Morphine which very often just helps me to bear it.
I do despair that if things get any worse I will just be completely confined to bed...

dreamdaisy

I don't know too much about AS but it would appear to me that you are not taking enough approved medication to manage your conditions, hence the state of living with an on-going flare. I have PsA plus OA and the meds for the one don't affect the other. My pain relief is 30/500 co-codamol but I accept that they only dull rather than eradicate. When are you due to see your rheumatologist? DD

charrisse

I am not seeing a rheumatologist but I have decided to go to see my doctor next week and see if I can get some more information on anything else that can be done. I feel I just can't keep going on like this for much longer... (that's just a figure of speech by-the-way and I'm sure you know what I mean!)

dreamdaisy

Crikey, why haven't you been referred? :? I know that AS is on the auto-immune arthritis spectrum, my rheumatologist ignores my OA and my GP ignores my PsA because each knows the other has it covered. Who diagnosed the AS and what are your arthritic complications? I won't be back tonight but will be tomorrow. DD

charrisse

I do remember some many moons ago having had an X-ray of my back which was/is the only time I had any investigation of any sort.
I think I shall ask my doctor what or why there has not been any other sort of diagnosis done since then... good point, thank you!

stickywicket

DD's right. If you have ankylosing spondylitis you need the proper meds. You also need exercise so being unable to get out of bed would be an absolute no-no. Try reading this, charisse, then get on to your GP to refer you. http://www.nhs.uk/Conditions/Ankylosing-spondylitis/Pages/Treatment.aspx

LignumVitae

Was it your GP who diagnosed AS from an x-Ray or have you seen a specialist in the past and no longer are on their clinic? AS is usually diagnosed through blood tests and an MRI scan but there can be nothing to see on an MRI never mind an X-ray depending on disease progress. Have you been offered physio? It's important to keep your back moving and it's also important to be on medication that can help manage AS. I think if you feel your GP isn't as helpful as you like it may be worth reading the NICE clinical pathway to care for AS so you can understand how AS is supposed to be treated or maybe read that before you see your GP so you can back up your request for specialist treatment. I have a diagnosis of AS which was finally made this summer by my rheumatologist after observing me and treating me for many years. You need care and treatment that a GP cannot prescribe. I really hope you get some help soon

charrisse

Thankyou for your input it has certainly given me a more positive feeling about getting something done.
The odd thing is that when I ask for help in a specific area I tend to get fobbed off and yet over the past year I have been told firstly that I had cancer, then it was kidney failure and was two steps away from needing dialysis, next I definitely had a bleed in my stomach. Following that my cholesterol level was really high..7 and it was actually 4.7 and then he insisted I had a heart attack in January when the specialist had specifically explained to me while I was in hospital that it was not but the arrhythmia I had was the reason for my having a pacemaker fitted... and each time he gave me little or no reasons for his supposed diagnosis and actually forgot that he had told me about the first two things until I brought it up.
I had a meeting with the practice manager and told him about all of this and I am now with another doctor, thank goodness! I just hope she will provide me some answers and better care too.

stickywicket

That all sounds horrendous, charisse, but, whatever else has been going on, if you know for a fact you have AS then you should be under the care of a rheumatologist, no ifs or buts. When were you diagnosed and by whom?