Spondylo Arthritis

mandy1967

does anyone else have Spondylo arthritis affecting their lower back, ankles, & knees?

I have tried Depo injections, physio and acupuncture nothing has taken down the inflimation. Does anyone else have any ideas of anything else I can try?

This affects my whole life so I now work for myself from home so I try to work around bad days but they are getting to be more than the good. I also have oesteoarthritis in my wrist which needs fusing but I am putting off as I am self employed and cant afford so much time out.
thanks

speedalong

Hi Mandy and welcome,

sorry I don't know anything about your type of arthritis, I'm an OA girl ... but others will be along soon who know more.

Speedy

oneday

whats the end of your word spondlo?
i have spondylolithesis.....i work part time and make sure i move around alot not just sat at desk for hours....

mandy1967

it's spondyloarthritis caused by Crohns disease

oneday

mandy1967 wrote:

it's spondyloarthritis caused by Crohns disease

omg, sorry to sound ignorant...but i didnt know that crohns could cause other illnessess......and what is spondyloarthritis exactly?

mandy1967

Dont feel ignorant I didnt know that either until mine got diagnosed 2 years ago after suffering for 6 years. and I have had crohns for 22 years.

It affects my lower back, across the sacro illiac joint right across the bottom of my back. It also affects my ankles, knees and neck. Sitting is better than being on my feet first because of the pain i suffer in my ankes but also standing means pain in my back. This means I am not able to walk very far too and most days I limp either because of my back, my knnes or my ankle which dont seem to have good days together so its always one or the other!!

Driving is getting very painful obviously because my ankle but I also have oesteoarthritis in my left wrist which means that changing gear is becoming difficult and some days its painful to full lock the wheel.

My one worry is that I soon wont be able to drive and then it will be difficult to get out. I also need to be able to get to the towns post office everyday to post my cutomers orders as I work for myself from home.

I suppose this is the best its all going to get but I need some help in coping strategies.
thanks
mandy

oneday

mandy1967 wrote:

Dont feel ignorant I didnt know that either until mine got diagnosed 2 years ago after suffering for 6 years. and I have had crohns for 22 years.

It affects my lower back, across the sacro illiac joint right across the bottom of my back. It also affects my ankles, knees and neck. Sitting is better than being on my feet first because of the pain i suffer in my ankes but also standing means pain in my back. This means I am not able to walk very far too and most days I limp either because of my back, my knnes or my ankle which dont seem to have good days together so its always one or the other!!

Driving is getting very painful obviously because my ankle but I also have oesteoarthritis in my left wrist which means that changing gear is becoming difficult and some days its painful to full lock the wheel.

My one worry is that I soon wont be able to drive and then it will be difficult to get out. I also need to be able to get to the towns post office everyday to post my cutomers orders as I work for myself from home.

I suppose this is the best its all going to get but I need some help in coping strategies.
thanks
mandy

Hi Mandy
thanks for explanation. Hopefully some peeps will come along with some helpful info. Perhaps you should try also posting on the Living with Arthritis zone. I dont think everyone checks this area out as much. all the best.

cutieclaire

Hello,

Hope you are well. I have sponylarthropathy. I have the pain in the lower back and painful ankles and knees.
I also have inflamatory arth in the perlipheral joints. My hands, wrists, elbows, shoulders and neck.

I was on steriods for a while but have put on so much weight that it has got me down. I am on Salfazalizine which is ok and starting to work.

I also have had IBS for many many years. Hope this helps
Claire
xxxx

oneday

Claire - glad you posted - so you can offer support.

cutieclaire

Yeh I can, Hope it helps. I feel so much better in myself going back to work, even though the pain has come back a bit.

Hope people are well out there as this is a horrible disease and its not just the pain, its the feeling tired all the time that really can wear me down.

But no one or thing is knocking me down. UP UP UP XXXX

mandy1967

cutieclaire wrote:

Yeh I can, Hope it helps. I feel so much better in myself going back to work, even though the pain has come back a bit.

Hope people are well out there as this is a horrible disease and its not just the pain, its the feeling tired all the time that really can wear me down.

But no one or thing is knocking me down. UP UP UP XXXX

Thank you Claire I was told by the Doctor that it was almost like Ankilosing Spondiltis except I dont have the herditory factor. I was on long term steriods for my crohns some years ago for years at a time so i dont think they will put me on them now because of the periods of time I have been on them. I cant take anti inflamitaries because of my crohns and at the moment all i take is panadol!!! which is having very little effect. I tried the Depomendrone injections. The first works beautifully, the second had little effect and the third none at all...............back to square one.

But as you said Claire UP UP UP

Mandy

susiej

Hi Mandy,

I have spondyloarthritis which affects my lower back, neck and hip joints. Like you, I have been told it's like AS (and may yet evolve into this). Having had a bad do on Sulfasalazine, now on Methotrexate and anti-inflammatories, which seems to have done the trick unless I over do it (which doesn't take much).
Most days I'm a bit stiff and achy, but on bad days I can barely walk. The part which I find hardest to cope with, however (and the bit that I think is least understood by others) is the sheer and crushing tiredness that comes with a flare up. People are generally very good, but do seem to think it's just a 'bad back' and it's really hard to explain the effect it has on your brain and ability to function generally!!

I work part time mainly from home. I think I'm lucky in this regard because it means I can work round the problems I get. I have been tempted to try and go back to full time work but I'm really wary of taking on too much and making things worse.

I'm sorry this has turned out to be a bit of a moan - I didn't mean it to be! It's good to be in touch with others who share a similar experience. Wishing you all the best x

mandy1967

It's so good to hear someone saying the things I say. As you say tirdness is a great issue and so is walking at all somedays but most days I cant walk far. I have found I now go out less and less. I used to go to the theatre but the seats are so uncomfortable I suffer too much afterwards. Driving is also very painful on my ankle, wrist and back, I have a manual, how does anyone else find this?

I am lucky as I have started working for myself as being at home all the time doing nothing was making me very depressed. (it gave me too much time to think about the future). I try to pace myself a bit but its not always easy as I am customer lead.
Mandy

susiej

Yes, the thing that I'm gradually coming to realise is that it's a question of adapting to everyday tasks in any way you can. I was diagnosed in November after 3 years on and off symptoms (now mainly just 'on'!) I found shopping at the supermarket so tiring, for example - just being on my feet for that long, bending and carrying etc - that I have started doing the shopping online. It took me ages to realise that this simple solution would help so much!! I'm not sure why I never did this before. It's that thinking about things in a 'problem solving' way that I have not been used to (or any good at) before, but I know loads of people with many different conditions have to do it all the time and to a far greater extent.

At the same time, it can still get very frustrating not being able to be as active as I used to be - I used to love running etc - and that's taking a while to get used to. When I'm feeling ok, I try to swim etc, but just get so tired afterwards that it puts me off. I also find driving hard because it's often difficult and tiring to concentrate for long, so I get worried about that. Other people have said that an automatic might be a good idea.

It's good to hear that you have found your work a good distraction and that you've found a way to make it work for you. I really hope that you get a combination of medication that works for you - things are being developed all the time so fingers crossed x

cutieclaire

Hi Mandy, I have been thnking about you and how you are getting on? Hope all is well at your end. I on the other hand have had a big flare p and they are possibly changing meds. Work hasnt been great either and now I have decided to leave and I do feel much better as the more stressed I am the pain is a lot worse.

Although this is horrible I am ok and have a good family which helps.

I just wanted to let you know I have been thinking of you.
xxxxxx