introduction and a first question.

delicatecloud

Hello,

My name is Alexandra. I might have anqylussing spondylitis. The doctor did not tell me about the Lb-27 blood test, however he said I have spondylitis stage 5. I have periodical low back pain sometimes going too my buttocs. I can't really explain it. The muscles go into spasms and if I take paracetamol, I am fine again for another 6 months or a year even. I have researched so much about this on my own, because my rheumatologist did not tell me much, apart from prescribing neproxin and telling me to take it in a sos situation.
I am really scared about all this. I can only cry, I feel my life has been taken away from me. I will no longer be able to travel, my spine may fuse. I would like to hear from someone with this condition please to give me some hope of living a normal life. Could it be another back problem? If so, why would the doctor prescribe neproxin?
I do appologise for so many questions. Maybe I will feel more positive in a few days.
I hope everyone ishaving a great day.

dreamdaisy

Hello, it's nice to meet you and I hope we can help with information and support. I understand the fear and worry, ankylosing spondylitis is an inflammatory condition and once it's with you it won't be going away as such, but you seem to be a little fortunate on that front. You say that when you take the paracetamol things calm and you are fine for six months or even a year - surely that is something to be appreciated? Your doctor has prescribed naproxen because that is an anti-inflammatory, he has told you to take it when it flares again so that is good advice - we are normally told to take it constantly but every case is different and it would seem that you are not too badly affected as yet, yet another thing to appreciate.

Bones take years to fuse, it won't happen overnight and as for travel, why would you need to stop? The only thing that stops us is us and our attitudes - the disease has to learn to live with us, not vice-versa. I have had to adapt over time and I have found that if I don't it only makes things worse for me - utterly pointless methinks.

I too know all too well that low feeling, I am in a lovely deep trough at the moment after a very tough few months but it will pass, the bad things always do (just like the good things, sadly). I hope you can find your way through this, we will do what we can to help. I wish you well. DD

stickywicket

Hello Alexandra. I guess it is all a bit scary at first but I'd advise you not to go trawling the internet for information as much of it is inaccurate. Stick to safe sites such as this, NHS or the National Ankylosing Spondylitis Society (http://www.nass.co.uk/ ) Even then, don't assume that the worst case scenario will happen to you. You are still you and your life hasn't been taken away from you. It will be a bit different, maybe, to what you had planned but then all lives are.

If yours can be controlled by paracetamol and occasionally naproxen it isn't too bad. I think it's unlikely it will be a different back problem as rheumatologists usually know their stuff.

I don't have AS but I've had RA for 52 years since I was 15. During that time I've got a degree, married, had children and done most of the things I really wanted to do. Despite fused and replaced joints I still fly to the USA every year to visit my son and grandson. Life is by no means bleak.

Give yourself time to accept your diagnosis. Maybe have a chat with your GP about it. Or, indeed, ring our own Helplines on Monday. Meanwhile we are all here to offer support.

hileena111

Hi Alexandra
Welcome to the forum.....I've got OA so can't really help.
Hope to hear from you again and that you get information from others
Love
Hileena

delicatecloud

:Hello,

I would like to thank everyone so much for your support. I know I am feeling down at the moment, not so much because of pain but because of a sense of grief. I am not sure what am grieving for. Perhaps for not being as mobile as I want to be but I think things will improve as I come to accept my condition.
It is great to know you can lead an active life within possible. I would like to ask however, with the right eiet, yoga or pilates can this condition go into remmission? I did find that if I am calm, relaxed, I can move better and I don't have so much pain so perhaps there is a link between stress and anqylussing spondylitis.
I would like to ask also, are there any clinical trials about AS? IIs there somewhere I can go to to research?
I do appologise for so many questions. I am not sure if I can help anyone at the moment with practical help but I can give you support by encouraging you all.
Stay strong and keep smiling.

hileena111

Hi
You've hit the nail on the head when you talk about being "down"
A sense of grief is normal....you are grieving for you loss. OK its not someone's death.....but it is a loss....of mobility, and a lot of the things that you once could do and now can't do.
Exercise {the right kind} check with a physiotherapist if possible can be beneficial. As can relaxation. I have a couple of relaxation CD's and find they are great.
You will eventually find what works for you
No doubt others will come on and add to this....I don't know about research...sorry.
You ask as much as you want to and we'll try to answer although we are not medically trained.....we can only give you our opinions and things that helped us. I'm sure you will be able to help us
Love
Hileena

barbara12

Hello and welcome to the forum
I have OA and some of it in my back, I have been told that my lumber may fuse over time..please don't think you are on your own feeling down...its is part of arthritis ...you suddenly realize maybe I wont be able to do what I used to ...but everyone is so different..like SW says don't go googling to much, stay with us and you will see how people can still go about there lives..by adapting the way they do things.
It will do you good to talk ...so dont forget we are always here to support one another x

stickywicket

delicatecloud wrote:

I am not sure if I can help anyone at the moment with practical help but I can give you support by encouraging you all.

And that is so helpful and important, Alexandra. A few friendly, encouraging words can be a huge help to any of us when things are bad.

I think the grief is a perfectly natural reaction to a diagnosis of AS, or any other long-term disease, so just allow it to happen.

Most of us with an auto-immune form of arthritis find that stress makes everything worse - which, paradoxically, is in itself stressful :roll: so anything you can do to relax would probably be helpful. Remission, however, is an elusive beast. My RA is in pretty good control right now but I wouldn't say it was in remission. That last happened when I was pregnant with No 1 son 43 years ago (It didn't happen with No 2.)

I'd suggest you check out Arthritis Care's publications re Healthy Living. (top of page) and, for trials and current research on AS, I'd look at the NASS site I mentioned earlier.

constable

Hi there, I just wanted to say welcome to the forum. They are all a wonderful bunch of people on here.

I cant really help you as I have OA, had a Hip replacement over 2 years ago now. I have arthritis is the lower and upper of my back now and shoulder.

It is the hardest thing to accept your new limitations I know. But you will accept it gradually. We all feel the same, we have had something taken away from us. And yes, I know stress and worry can make the situation worse. But, as we all know, we cant be calm all the time.

I do hope you don't look up to much about your condition. That can sometimes be a bad thing. Let your doctors tell you all about things. They will put you more at ease.

Shall look forward to seeing you around the forum.

Keep us informed on how you are doing.

delicatecloud

Hello everyone

Thank you so much for being so nice to me. I know things will come in time for me. I think my next struggle is telling my new partner I have arthritis, I don't want to scare him off. I have to exercise my diplomacy skills
Do any of you do yoga or pilates? I am thinking about going to a few classes to learn the basics and then do it at home. I know about pilates but not yoga so much.
Another unexplainable problem I am having is swallen legs and feet which become really red. I am taking daflon 500 and a water retention tablet. It has improved but not as much as I wanted. I would like to share two tips with everyone which worked for me. There is a cream I am not sure if I can mention the brand, if I can please tell me and I will post it when I reply the other tip is if you can, take a vitamin D supplement. It really worked for me, I am feeling much less pain now.
I am going back to the Uk on the 28th, have come to see my family in Portugal.
I hope everyone has a good night. Better get off the computer before my young cousin chases me off :)this is called, I am 12 and I want everything yesterday

Toots

Hi there, and welcome from another newbie x

Everyone here is been so friendly and welcoming, not to mention knowledgeable so I'm sure you'll find it really helpful to hang out here! x