Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group About me

Just before you continue reading, I'd just like to point out this could be a bit of an essay so you might want to get a cup of tea or just click off ha-ha.

My name is Joe I'm 29 from Liverpool, England I honestly can remember exactly when I was first diagnosed with AS I think it was about 10 years ago. It all started when I picked up an injury playing football, my ankle swelled up and just wasn't healing, and that was when I was 14. After the injury I started getting pain in other parts of my body and eventually I became extremely stiff and didn't really go out at all.

Once I was diagnosed say at about the age of 20 I was put on pain killers and anti-inflammatory tablets, and I sort of felt normal again, I'd go out worth friends drinking and wouldn't be in that much pain. At the time I had really stiff hips and could not open my legs much but my back wasn't that bad. I took a steroid called Winstrol for a few months which made my upper body strong and this compensated for my legs and hips being really stiff. I felt really good and really fit. (This was a personal choice not prescribed by a doctor)

Eventually I started becoming immune to the tablets and they stopped working as well as they used to, I was still fit and strong but was in pain quite a lot. This led to me going the gym less and losing my strength over the next few years. I then started smoking cannabis as I tried it and it relieved my pain, and also it made me feel better as I was a bit depressed as I was in pain a lot.

After a few years of smoking cannabis I started thinking to myself and at the time I was single, I had become obese, and I didn't have a job. I thought to myself I want to lose weight feel good about myself again get a girlfriend and a job.

I stopped smoking cannabis and lost over 3 stone in weight. I eventually got a job and a girlfriend. At this point in my life I was probably my happiest, I looked and felt good, I was happy in my relationship and was glad to be back in work. My AS wasn’t that bad also I had pain but just put up with it as I wanted to improve my life.

Since I have been with my girlfriend and been back in work I have put all the weight back on and more. I now weigh about 17 stone and I’d say my ideal weight is 12 and a half stone so I’m about 60 pounds overweight. Since I met my girlfriend we always eat fast food and I don’t go out really just sit about on the couch this is why I’ve piled on the weight back on. I’ve also become very depressed I think my work could be to do with this as well as my AS and being so overweight.

Something else that has happened as a result of being depressed is I have developed a gambling addiction which is pretty bad I’ve got myself into a terrible mess over the last couple of years getting myself into about £18,000 debt and completely ruining my credit score and any chance I ever had of getting on the property ladder.

I am currently taking Enbrel anti-tnf injections which is working quite well for me, I don’t tend to take any pain killers unless it is absolutely necessary. At this point in my life now I am the worst I have ever felt. I virtually have no twist movement in my spine and can only bend slightly. Simple things people take for granted like putting on their socks, cleaning themselves after they’ve been the toilet I cannot do any more. Me and my girlfriends relationship is affected as well as when we are intimate my lower back really hurts which means we do it very rarely.

I think a few years back I just stopped caring about myself and just ate food to make me happy. Also when I was first diagnosed with AS I was not given great information about it, either that or I was ignorant and didn’t listen much. I just thought I’ve got AS and there’s nothing I can do about it so whatever happens to me I’ll have to deal with.

My life right now feel all over the place. As I have done virtually no exercise over the last few years as well as my spine and hips being stiff all my muscles have become very stiff. In the last few weeks I’ve started thinking a little differently, I’ve started trying to get my life back on track. I’ve tried going to hydrotherapy which was good the staff were friendly enough but I got the impression they were trying to move me on ASAP and get me to go to a heated pool on my own. I’ve also tried seeing a physiotherapist privately who recommended massage on my muscles to loosen them which may make me slightly more flexible. She told me my calf muscle was so tight it felt like a rock. I have also went to a chiropractor and asked if he could manipulate my spine. He advised me that if I could get an up to date X ray he could do this as long as it had not already seized. I don’t think I have had an X ray since I have been diagnosed so at least 10 years ago and the chiropractor was shocked by this he said my rheumatologist should have sent me for additional scans to see if the spine had started to fuse. I have also tried to see a hypnotherapist to help me with my gambling and depression I think this helped but I need to go to more sessions.

So I have been to a physiotherapist, chiropractor, and a hypnotherapist all privately. If I wanted to go to hydrotherapy now I would have to pay for this myself as I was discharged from the hospital physios. I also see my rheumatologist every 6 months. Ideally I would like to attend all these things but I can only afford to go to one of them.

I’m trying to sort myself out but it seems there are so many obstacles. If I think of anything further to add I’ll add it to the post but I’ll leave it there for now. Does anyone know the answer to this question also?

Can I ask my Rheumatologist who I see on the NHS for an X-ray or MRI scan and get a copy to show my Chiropractor who I see privately?

Thanks for reading

Joe

Dear Joe,
You are giving out many of the solutions to your problems yourself: diet and exercise. Self-control is the hardest in the world, but you have come to the right place!
Make a commitment about acheiving your goals here at KickAS, then stick to them! You will find a lot of tips here about dieting by cutting out starched and sugars from your diet. We will be watching you!
Best,
Loha

Hi, and welcome to another one of the UK contingent.

It does sound like you are really starting to take control and make some good changes. Have you discovered www.nass.co.uk yet? Its the UK ankylosing spondylitis society, and well worth joining - for the regular magazine, the information, and their regional groups as well. If you are lucky, there will be something happening in your area http://www.nass.co.uk/nass-near-you/ - I believe that some areas have exercise groups that include pool therapy, though as you have discovered the physios seem to be pushing people through fast and discharging them. If you do have to go to your local swimming pool to keep up the therapy, ask them if they will allow you to have a concession rate if its disability related exercise.

Chiropractors can be a bit dangerous with AS, and manipulation is generally not recommended at all for people with AS due to the risk of complications, including fracture, though if your one wasn't prepared to work on you until he had seen an xray, I'd say he had at least some knowledge of AS, so might be OK. Even firm massage can be dangerous if your spine is starting to get fragile. On the NASS website there is a whole lot of information including some downloadable exercises. Regular stretching is one of the best things you can do, as well as other gentle exercise like walking or swimming.

If you do want to get an xray, you could try your GP as well, though they may not want to order the full spine xray that you would need for the chiropractor. MRIs do need to be ordered by a rheumatologist. Years ago, I went to a chiropractic clinic where they had their own xray machine, and I had one done there, so maybe you could check around. If you do get imaging done on the NHS you can ask for a copy of it on CD. They will charge for it, but I wouldn't expect it to be more than £10.

You could also ask your GP to refer you to an NHS physiotherapist which won't cost you, rather than paying to see one privately. Make sure they refer you to a rheumatology physio if possible. Some areas you can self-refer to NHS physio as well (make sure you say you have AS and ask for a physio who knows about it).

As far as diet and sitting around with your girlfriend and not doing anything - how about you taking more control over food - starting to try cooking more meals at home rather than the takeaways? Even if you just do one home-cooked meal a week to start with, that will help. Also inviting her to go out for walks or swimming with you. Or ask her to help you keep motivated with an exercise programme by doing the stretches with you.

Good luck, and keep on with the progress you have already made.

Hello Joe,

Thanks for sharing your story. Hope you can find answer to the pain and the other issues you are dealing with.

Have you been diagnosed with AS, if not what makes you think you have AS?

Several of us here with AS follow No Starch Diet.. many also lose a lot of weight in following this diet. It is very strict and requires a lot of discipline, but many here find relief of their AS pain with it.

Best to you on finding answers and sorting this out. Keep coming back if you have questions.

Tim

WELCOME, Joe:

We can turn the fusion clock back about two years is all, so if stiffness is only pre-fusion (fibrosis), there is some hope of regaining some range of motion.

Understanding that the biologic drugs are not actual "treatment," but can be useful in helping to reduce the pain, it is important to attack AS with more than one treatment--and the overall majority of this comes from ourselves; our lifestyles.

The exercise is important, and You will be very happy to learn that Carol Sinclair's NSD will help to reduce the weight; hope You will check it out on NSD and Diet Forum here.

Whatever You decide, we are happy to have You as a member and I want to wish You

HEALTH,
John

Thanks everyone for the support and advice. Just to answer one of the questions I have been diagnosed with AS by my rhemotologist as I have the HLA-B27 and I have had iritis also and x rays many years ago.

I would like to try the NSD and I have done Atkins before and found it really hard, are there any things like ready meals which do not contain starch? As I don't always have time to make fresh food.

Thanks again everyone

Hi joe, I'm from just down the road in Runcorn
So chin up kidda, your not the only spacco in town
Sorry to hear your havin it rough mate, but you sound like your stuck in that horrible rut, the vicious circle where pain and fatigue makes you want to do nothing, but doing nothing makes you worse.....
You need to have the determination to make a start at trying to take control of your health.....once you muster the small amount of motivation to get moving, the positivity and natural endorphins will take you that bit further on. Hopefully, you'll feel a little less stiff, maybe drop a few pounds and start to feel a bit better about your self again bud.
Bottom line is, its all down to you kid.

Dig deep, find that positivity, take control.

I'm just having some hydro myself at Halton hozzy, its the same sitch mate, 4 sessions and they want you out and in a pool . However, they have a local pool where I can attend on a Tuesday afternoon with others as a group, the physio will attend too.... It helps allot so i prepared to give it ago.
I'm gonna try regular swimming too... I do lots of walking with the dog....

I know how hard it is mate to find he energy and motivation to get on with it, but really, you don't have a choice. Move it or loose it buddy

Always here if you want a chat, especially for a local boy

Thanks for the support buster, do you do the NSD?

No mate, i really don't think i could strictly follow the NSD ......
It seems awfully strict, we already have dietary issues in our house as my lad has a nut allergy..... Adding another load of things i can't eat into the mix would make tea time hard.!!!!!

I guess if i had no other options and had to try it , I would, but right now the pain in the [*bleep*] it would cause would not outway the benefit......

Hi Joe,
Welcome and sorry to hear about your AS and pain. I think many of us also eat foods to comfort ourselves. I know I am one of them.
I followed the advice of a friend and juiced for a week to get out of SI joint pain. It made my pain much better and 6 months later my labs were normal.

May I ask you a question about your iritis? Does it make your vision blurry and does it affect one eye at a time or both eyes?

Hope you feel better really soon, I'll say a prayer for you tonight.
Take care!