Off My Chest

rpringle

Hi Everyone

Just wanted to send a quick note to see if anyone feels the same as me.
Now I really try not to feel sorry for myself most of the time but some times i feel a bit fed up.
I am 32 and suffer from Ankylosing Spondylitis which has been getting progressively worse over the last two years.
I have been off work but have now gone back on part time medical grounds doing just three and a half hours per day.
My neck has been really stiff and painful this weekend and I just couldn't make it in to work today. I actually got a lift to work but could not get out of the car!!!
Some days like today I just feel quite exhausted by it all. It's not just been the A.S. Before this I was in and out of hospital for two years with pancreatic problems which resulted in me having major surgery, then would you believe it I found out I had this damn A.S.
The good news is that I have qualified for Humira which I am due to start on Wednesday. The problem is that with all new drugs the long term side effects are not known and this worries me a little and really worries my lovely wife.
I know what most people say is that you should not worry about the future and that if it makes a difference to your quality of life now then you should take it. The problem is that in 2006 I nearly died when I had a very severe attack of pancreatitis and I went on to have a further 9 attacks before I had a pancreatic bypass.
I was then given sulphasalazine to treat the A.S and would you believe it. It caused pancreatitis and I ended up back in hospital.
Anyway really what I wanted to say was that I get so tired of it all sometimes. I am struggling at work at the moment (I deal with the public in quite a stressful environment) and am dreading going back to work full time. I would love to go permanently part time say work 16 hours per week until i feel better but i am worried about money.
My wife (who i just want to add has been brilliant supportive and my little star throughout) is due to start her final year at university this year so money is quite tight. I have thought about applying for tax credits but not too sure whether to or not, I already get DLA.

Anyway sometimes I just want to scream with frustration. My main concern at the moment I think is work. At the moment all my drive and ambition is gone. I actually said to my wife the other day that I am so tired at the moment that I wished I was retired!!! My god I am only 32.

Anyway thanks for reading my little moan. I hope I haven't depressed you all!

Rich

bailey27

Hi
I am having investigations done at the moment for AS too. I have all the signs, symptoms.. but the blood test is negative so havent had a formal diagnosis yet. I am just 29 and have only seen the rheumatologist twice. I take medication which can work one day but not hte next. It is very frustrating.
My main problems area is my lower and back and the left side of my hip. however, recently I have been having a aching back but behind my chest. I sometimes have pain when taking a deep breathe in. I was wondering if it is quite common for it to travel up your back?? How long have you had it?? did you blood come back positive straight away??
Sorry the questions but I havent met anyone close to my age on here with similar problems.

rpringle

bailey27 wrote:

Hi
I am having investigations done at the moment for AS too. I have all the signs, symptoms.. but the blood test is negative so havent had a formal diagnosis yet. I am just 29 and have only seen the rheumatologist twice. I take medication which can work one day but not hte next. It is very frustrating.
My main problems area is my lower and back and the left side of my hip. however, recently I have been having a aching back but behind my chest. I sometimes have pain when taking a deep breathe in. I was wondering if it is quite common for it to travel up your back?? How long have you had it?? did you blood come back positive straight away??
Sorry the questions but I havent met anyone close to my age on here with similar problems.

To be honest I have never really chatted to someone properly who suffers from A.S this forum is something that I should use more.

Well, I did here back within about 2 weeks that I had the gene for A.S.

It's strange that you do not have the gene but have all the symptoms are they going to do a re-test? Did they test your inflammatory markers to see the levels of inflammation?

In terms of the areas of pain. Well my lower back does get quite stiff and painful but unfortunately I get pain in my feet ankles and neck at the moment.

How are you coping with it all at the moment? Try not to get too put off by my last post!!!

elnafinn

Hi Rich

I am sorry to hear that you feel unwell today and I am sure you wish to scream in utter frustration. Regarding Humira, I believe there have been a couple of posting lately regarding humira and the people on it, not faring too well...... It is scary isn't it? Everyone is different and it is the total unknown. You have been through one heck of a lot and I can well understand your reservations. The medical profession do not seem to know enough about it yet, and if you seek advice with some problem that you feel may be to do with the humira they may well say otherwise, unfortunately in ignorance, which does not help you one jot.

You are between the devil and the deep blue sea, aren't you? Damned if you do and damned if you don't...... perhaps. I suppose you have to have faith in the person/department prescibing this for you and try to learn as much about it as possible. Presumably you will be checked over very regularly and if you have a strong feeling that things are not right and it is the humira and the medics in their ignorance say otherwise, or say, go away and come back next week, you must stand your ground and be firm. We know our own bodies more than anyone else.

I wish you well and you are blessed to have such a loving, supportive wife.

Elna x

ps when I say I believe there have been a couple of not so good postings on here re humira, there are others of course that have said it is the best things since sliced bread. There have been more positive than negative postings about it, unless people do not like to post anything too sensitive about it, feeling for others on this medication. I think it is good that people do, as it makes those on it or about to be on it, much more aware.

bailey27

rpringle wrote:

bailey27 wrote:

Hi
I am having investigations done at the moment for AS too. I have all the signs, symptoms.. but the blood test is negative so havent had a formal diagnosis yet. I am just 29 and have only seen the rheumatologist twice. I take medication which can work one day but not hte next. It is very frustrating.
My main problems area is my lower and back and the left side of my hip. however, recently I have been having a aching back but behind my chest. I sometimes have pain when taking a deep breathe in. I was wondering if it is quite common for it to travel up your back?? How long have you had it?? did you blood come back positive straight away??
Sorry the questions but I havent met anyone close to my age on here with similar problems.

To be honest I have never really chatted to someone properly who suffers from A.S this forum is something that I should use more.

Well, I did here back within about 2 weeks that I had the gene for A.S.

It's strange that you do not have the gene but have all the symptoms are they going to do a re-test? Did they test your inflammatory markers to see the levels of inflammation?

In terms of the areas of pain. Well my lower back does get quite stiff and painful but unfortunately I get pain in my feet ankles and neck at the moment.

How are you coping with it all at the moment? Try not to get too put off by my last post!!!

Hi, well I had 2 MRI scans, one on lower back and one on hips and it showed inflammation in the lower back and hips.
She told me that in AS it is common to have problems in just one side of your body which is what I have. I had a lot of blood tests on my first Rheumy appointment and when I went back she said they were ok. I am not sure exactly how she came up with it, think that is why I havent had a formal diagnosis yet and it is just a possibility. They know I have an inflammatory arthritis in my lower back and hip I think they just dont know what type or how they are going to treat it. They didnt do a re test when I went the second time, however, that appointment was a nightmare - (thats a whole other story!!) I go back again in a couple months so hopefully get more information then. Is there anything I should question them about that you can recommend?

frogmorton

HI Rich
Just wanted to say Hi and to offer you my support.
So sorry you are having such a rough time of it at the moment and that work is proving too much
You sholdn't feel bad about having a moan as you no doubt can see - we all do it from time to time and it does help!!!
Your post didn't depress me - rather it made me sad for you but also think how lovely your wife sounds and how lucky you obviously feel to have her.
If your meds get sorted maybe work won't be such a drag for you - you so obvioulsy want to support your lovely wife - and why not?!
I hope you feel a bit better soon.
Good luck
Toni x

woodbon

Hello, Just to welcome you to the site and to say that I hope you meet some of the people who have similar problems to you. I have OA so thats not a lot of use, as its a different ball game. However, I can sympathise with your problems and I know that taking a new medication is quite a worrying time. I do hope that you do find the drug helps you, with no side effects.

Working must be hard at the moment, do you have any chance of sick leave until the medication is sorted out. You may feel different after taking that. Good luck with the medication Love Sue

rpringle

bailey27 wrote:

rpringle wrote:

bailey27 wrote:

Hi
I am having investigations done at the moment for AS too. I have all the signs, symptoms.. but the blood test is negative so havent had a formal diagnosis yet. I am just 29 and have only seen the rheumatologist twice. I take medication which can work one day but not hte next. It is very frustrating.
My main problems area is my lower and back and the left side of my hip. however, recently I have been having a aching back but behind my chest. I sometimes have pain when taking a deep breathe in. I was wondering if it is quite common for it to travel up your back?? How long have you had it?? did you blood come back positive straight away??
Sorry the questions but I havent met anyone close to my age on here with similar problems.

To be honest I have never really chatted to someone properly who suffers from A.S this forum is something that I should use more.

Well, I did here back within about 2 weeks that I had the gene for A.S.

It's strange that you do not have the gene but have all the symptoms are they going to do a re-test? Did they test your inflammatory markers to see the levels of inflammation?

In terms of the areas of pain. Well my lower back does get quite stiff and painful but unfortunately I get pain in my feet ankles and neck at the moment.

How are you coping with it all at the moment? Try not to get too put off by my last post!!!

Hi, well I had 2 MRI scans, one on lower back and one on hips and it showed inflammation in the lower back and hips.
She told me that in AS it is common to have problems in just one side of your body which is what I have. I had a lot of blood tests on my first Rheumy appointment and when I went back she said they were ok. I am not sure exactly how she came up with it, think that is why I havent had a formal diagnosis yet and it is just a possibility. They know I have an inflammatory arthritis in my lower back and hip I think they just dont know what type or how they are going to treat it. They didnt do a re test when I went the second time, however, that appointment was a nightmare - (thats a whole other story!!) I go back again in a couple months so hopefully get more information then. Is there anything I should question them about that you can recommend?

It's a tough one really as it is good to have a hard and fast diagnosis but this isn't the be all and end all. Remember that everyone has different symptoms and suffers/copes in different ways.
I come from a sporty background so my escape is through exercise. No matter how bad i feel i still try to do a little bit even if it just a few lengths swimming.
You should ask the Doc what you can do yourself to help.
What exercises you can do
Diet (I know a lot of studies say avoid acidic foods)
Stretching make sure you keep as flexible as possible as this will really help long term but get referred to the physiotherapist if you have not already done so.
What medication is out there for you? Do your research but don't google too much and scare yourself!!


To be honest you are probably already thinking of all these things but try to stay as positive as possible.

Oh and my final tip is never go to the hospital apoointments on your own. Take someone with you who can also ask questions. You will be amazed at how many useful questions other people can think of when they are in there that you might not think of.

All the Best

Rich

bailey27

Hi
Thanks for all that information it is great.
The medication I am on at the moment is celebrex and omeprazole.
If I need painkillers I have tramadol but rarely need to take them as I find hot bath does wonders!

I try and exercise as much as possible. I am fortunate enough to have a gym within 5 minute walk so I go on the bike and when my back plays up I go on the seated bike.

From the last appointment I had I have definately learnt the hard way about not taking someone with me. I appreciate that advice, thank you.

Hope you are having a good day.

Thanks again for your advice.