Another AS sufferer

charrisse

I was diagnosed with this about 4yrs ago after having quite a lot of pain in my back and neck. At the time was taking just ordinary type tabs - Ibuprofen and paracetamol. Now I take Naproxen and paracetamol but am finding this is not helping to counteract the pain and on top of that the pain is now in my arms as well so I find doing most things quite painful.
Just wondered if anyone has any advice, please.

caterina57

Hi and welcome to the forum
Yes this arthur is real nuisance and managing it can be difficult. I have Lumbar(back) and Cervical (Neck) Spondylosis (OA) which affects my shoulders and neck and I have problems with my hands and wrists and Guess what the knees and hips have decided to join in too. I take co codamol and a twelve hour slow release diclofenac and when absolutely necessary ibuprofen I also take a stomach protector called Lanzoprazole.
I am unable to have physio but do Hydrotherapy. I find that my condition is best managed with equal measures of activity and rest, ie if I sit too long I become stiff and in pain and if I do too much I am in agony - Its about understanding your own body and how it responds best.
The folks on this forum are an absolute fantastic bunch so supportive and have a wealth of experience. I found the site when I was off work for 10 weeks around christmas with a very bad back. I dont know what I would have done without these new friends as I was in a very dark place and at risk of losing my job. Thankfully I am just about recovered and have a new part time role at work which helps so much.
Hope to see you around the site.
Cath

constable

Welcome,

There are some lovelly people on here, well all of them, and they are always ready to help. I have OA lower back, waiting for a hip replacement. I've notice lots of other areas heurt now so will get myself of the the doctors, see what they have to say. You should join in with Vals Cafe, where you can get to know each other. You will be glad you joined.

Karen xx

julie47

Hi and welcome from me.

Sorry I havent got your problem I have ra so can not really help med wise.
But I would say that you should tell your doctor and ask if it would help if you were referred to a pain clinic or rheumatology dept.

I hope some one comes along and gives you better advice.

Take care
juliepf x

frogmorton

HI Charisse

I LOVE your name!

Serioulsy l suspect your medaication is not strong enough for you now....maybe you ought to be going back to the docs to get it reveiwed. There are loads of options available and maybe you could see a physio if you haven't for a while or get referred to a pain clinic - they seem to be the best at pain solutions.

Hope to see you again soon

Love

toni xxx

chris7

Hi and welcome charisse

Tend to agree with Toni, anti-inflams like naproxen can only do so much though they do help me, and you are usually I think like me, given a stomach protector with them? It sounds like you need a stronger painkiller to go with them though. I was given co codamol as the next step up from paracetomol but your doc would know what best to try next so hope you do decide to go back and tell it like it is so they can help.
take care
Chris

charrisse

Thought I would just update on this subject - and Thankyou for all your responses.
Did go to my Gp and am now taking Naproxen with the Lansaprozol. Did also have Cocodamol but the constipation became SOO bad that I had to stop them especially as this was causing a great deal of problems with my haemorroids.(I'm sure you wanted to know that! .. ) Now I just take a half of one along with the Nap + 2 Paracetamol which does help a lot.

hileena111

Hi
Sorry I'm late....but welcome anyway
I have OA in hips, lower back and ankle. Also got kypho scoliosis which they are working on now before they do a secend hip operation.
I was just taking paracetamol until I went to the doc to complain it wasnt enough and he sent me to the hospital...next thing......I was told i needed 2 new hips :eek: Now I'm on paraetamol and diclofenic slow release twice a day and a stomach liner as well. Oh codeine to be used as necessary......that is taken alone with prune juice to sort out the constipation
Hope you enjoy it here and I'm sure you'll get lots of tips
Love
Hileena

suzygirl

Hi, are you being reviewed reguarly by your rheumy?? You are not on any disease modifying drugs, which may help to halt the progession of this disease. Who is in charge of your treatment?? If it is your gp, I would be asking to speak to the rheumy. If it is the rheumy, then ring the careline for advice and go from there.

Have you been given exercises from physio to help?? If not ask for a referral. Sorry to ask more questions, it just sounds as though you are not being adequately treated.

Ankyspond

Hi,

Have just posted on here for first time and seen your post, nice to speak to someone else who has the dreaded AS.

I was diagnosed at 39, am now 42 and took them over 18 years to diagnose me. Have tried sulpasulazine, methotrexate along with pain killers, naproxen etc. In November last year I was put on anti TNF (Enbrel), I inject myself once a week which I never thought I would do. Anyway my pain score went down incredibly, if you have the option try it out it has my back, hips under control still have problems with other joints but working on that now with naproxen and pain killers. I teach and have three kids and live a decent life.

Good luck.

dreamdaisy

Hey ankyspond, that is good to read. I am pleased the enbrel has helped you so much, it's good to know that these drugs do work for some. I wish you well. DD

charrisse

hileena111 wrote:

Hi
Sorry I'm late....but welcome anyway
I have OA in hips, lower back and ankle. Also got kypho scoliosis which they are working on now before they do a secend hip operation.
I was just taking paracetamol until I went to the doc to complain it wasnt enough and he sent me to the hospital...next thing......I was told i needed 2 new hips :eek: Now I'm on paraetamol and diclofenic slow release twice a day and a stomach liner as well. Oh codeine to be used as necessary......that is taken alone with prune juice to sort out the constipation
Hope you enjoy it here and I'm sure you'll get lots of tips
Love
Hileena

That's such a good idea - taking the tabs with prune juice - will def try that!.. :idea:

hileena111

Hi
Its worth a try isnt it......I find prune juice which you can buy at our co-op is better than opening a tin of prunes......Dont know why other supermarkets dont sell the bottles but they dont seem to in this area.
Good Luck
Love
Hileena

Ilovemystaffie

I`ve had AS since 1979(but was diagnocsed in 1984).
I struggled along with not much help from my rheumatologist or gp until 1997,when i had to stop work following an rta 2 yrs before.
My new gp referrd me to Bath rheumy hospital which does 2 week courses for AS sufferers.
2 weeks of physiotherapy,hydrotherapy and also get given a daily exercise regime which you do at home.
I also found that their counselling session worked marvels for my state of mind and toaught me to deal with AS.
Recently,I`ve been given anti TNF treatment.
I suggest that you see you gp regarding a referral to Bath Rheumatology hospital and also talk to your rheumatologist about ant tnf treatment.
If you do a bath ankylosing spondylitis disease activity index(basdai) and score an index of 5 or more,you should qualify for anti tnf treatment,as your AS is described as active.
BASDAI test sheets are downloadable from the national ank spond society (NASS) website.
Good luck and don`t give up exercising.
Best wishes to all fellow AS people.
Pete

Ilovemystaffie

Hi,Me again!
I forgot to say that I`m also taking diclofenac 75mg twice a day as well as the anti tnf(early days for this treatment).
Have found Diclofenac to be the most effective anti inflammatory drug that i`ve tied .
Tried naproxen,indomethacin (both upset my stomach) and ibruprofen in the past.

tim60

Hi Charisse, sorry to about hear the pain and problems you´ve been having. I´ve had AS for about 20 years now (also in the neck), and it can be a bit of a so and so. Changing medication whenever the symptoms have increased has helped - I´ve gone from diclofenac to meloxicam and am now on seractil. The doc says it just that my body has becomes tolerant and needs something new. With every change the symptoms have receded - a bit of a merry go round - eventually I expect to do a full circle. So if the current pills aren´t working for you, maybe consider asking to try a different one.

Other than medication, I´ve found exercises for the neck and shoulders really help a lot. I try and do them even when things are a bit painful. Sometimes it helps after a hot shower or a session with a hot towel or bean bag wrapped around mi neck. I also take a muscle relaxant which also helps a lot.

Oh... and also special neck pillow which goes everywhere with me (just about).

Sorry I haven´t a lot more to offer you than this but I hope you find some relief soon. There are some great people on this board, so please keep posting to say how you are getting on.

Kindest regards
Tim

charrisse

Just to update on this subject..I have now been "officially" told my arms and neck prob is Polymyalgia..not that it makes much difference to me as the treatment is still the same.. Naproxen and 2 Paracetamol preceeded by Lansoprazole.
Unfortunately cannot take Diclofenac as it just makes me like a zombie and unable to do the slightest little job which is not a good thing as I live on my own.
Have also been to a course of Hydrotherapy for six weeks. The last one is tomorrow and whilst it has helped somewhat I don't know how I can carry that on myself as there doesn't seem to be anywhere to do so. Going swimming or into a swimming pool doesn't help as the cold water aggravates my condition too much.