Another flare-up

My left SI joint started flaring up Thursday night getting back from work and was very bad Friday and Saturday. Started taking the dreaded steroids again and it started to ease up considerably on Sunday. Luckily I had Monday (today) off work which was really useful to get over this attack. I feel I should be able to go back to work tomorrow, so that's an amazing turn around. Just hope it carries on getting better, shame I have to go on the steriods to get this better.My left shoulder is very bad though still and wish the GP would hurry up with an appointment to see a physio about it soon.

Steve has come down with a cold/throat virus and is feeling very rough. I'm hoping that I don't catch that as well as I could then be in for a very bad December as well.

Blood test results came back, with my inflammatory markers going up to 40 again, same as 6 weeks ago, so the pain I am feeling everywhere is corresponding, which is good as people won't think it's all in my mind.

I had to cancel xmas shopping with my friends on Sunday because of my latest flare-up. Oh well, still time before xmas.

A day of medical dates

Quite a day with medical appointments. I saw a GP this morning about my ongoing pain in my left shoulder and she seemed to think it was due to my AS as I've had problems now for 6 years or so. It could be that I tore a muscle and made it worse recently when I put my car into reverse the other day and felt something go. So time for more physio treatment and another steroid injection, goodie!! sigh! I also mentioned the pain in my legs, knees, foot etc.. and again seems to be because of my AS with my body flaring up after having stomach flu in August. It seems that my immune system has been attacking my joints and muscles since the flu.

Also saw the physio at Bognor hospital who talked to me about the drug Humira and how it works. I had to sit down and mark on a sheet of paper how bad my pain and tiredness has been over the last week. He has agreed that I need to go on this drug so is putting my aplication through and should here further in a month or so.

In the meantime I've got to wait for my dad to have his radiotherapy dates through and his operation procedure dates through for his bowel treatment. I just hope he hears soon as my mum is getting more and more frustrated and going spare not knowing. Starting to worry about her health.

Missing the sunshine

Had a lovely holiday in very warm and sunny Tenerife and all my aches and pains were slightly better out there, proably due to the heat. We left Tenerife in 30 degree heat and came back to cold, damp 12 degree Britain, quite a difference! I manged to get a massage at the hotel which was lovely and relaxing, luckily I managed to choose it on the only rainy day, so didn't miss out on lieing by the poolside. After only being back for about 4 days my back, shoulders and arms have decided to return to it's flare-up position, so typical, back to square one again. I managed to get all the way to work yesterday and think the train seats and sitting at my work desk may have aggrevated everything yet again.

Went to Bognor hospital this morning to see the ward sister for a check up and she gave me a much needed cortisone injection which she says should help the pain all over my body. Fingers crossed as I have to get all the way to Stevenage tomorrow for a web standards seminar. Working from home this afternoon, so will have to get cracking on that soon. I also had a chest x-ray this morning in preparation for me taking Humira at some point in the future. Just waiting for confirmation now.

Pain in left hip - 6
Pain in left shoulder - 7
Pain in upper spine - 5

Going on holiday!!!

Well, finally it's here...holiday time!!! My back is finally a lot better and good enough to go away and get some sun. Shame the steroids and not being able to exercise has put weight on me again, so typical I had lost 7 pounds due to the stomach flu but have put it all back on again and have my tummy flab back... great...! Just in time  for the bikini wearing, may have to hide myself away now. Never mind, I shall get back on that diet when I get home and get back up the gym.

Flight goes tomorrow morning at 6.40am yikes!! So we are staying at Premier Inn over night tonight.

I have all my medication, walking stick, heat and cold packs. Hate having to fill suitcase with all this stuff.

See you in a week, hopefully my back will hold out!

Back at work again

I managed to get back to work today despite my left hip still giving me grief. My left SI joint was much better than on Friday though, which is important as I can't move about with that sharp pain. I almost turned round on my walk to the station this morning to go home, but I grit my teeth and carried on. Very pleased I made it in today as I didn't think I would be back this week. Hopefully I can make it through tomorrow and Wednesday and then after that it doesn't matter as I will be on holiday in warm and sunny Tenerife with my lovely husband Steve.

As of tomorrow I am no longer Acting Senior Librarian or working with serials, I'm back doing my document supply work. Looking forward to my colleague Lisa coming back from maternity leave tomorrow morning as I have missed her a lot.

Left hip pain morning - 7
Left hip pain evening - 5
left SI joint - 3

Not again!

Great...my left hip has flared up yet again and I am off work once more. At least it is Friday, but this is getting ridiculous now. What do I have to do to get this flare-up better? I've tried everything. Even had a massage and some  physio on it last night to try and stop it getting worse, but it just seems to have gotten worse anyway. Supposed to be seeing MUSE in concert tomorrow night at Wembley Stadium, but not going to be able to go now as I am in too much pain. Hopeing someone on Facebook will buy them off us. Only waited a whole year to go and see them, typical. I was fine for a year until this flare-up. It just does not like me having any fun at all. Husband and I are supposed to be going on holiday this Thursday as well, so must rest up so that I can get on the plane to Tenerife. I don't want to cancel this as it has cost us a fortune.

Oh well, I will see how I am tomorrow morning, you never know it may miraculously get better over night!! Yeah..right!!

Tuesday 7th September

Finally managed to get back to work yesterday and don't feel too bad still today. My biggest problem is night time as I just can't get comfortable in bed as my spine gets stiff, sore and uncomfortable as well as my hips and left arm. So I have spent the last few nights trying to twist and turn in bed to get to sleep. Am exhausted today now after only a few hours kip Sunday night and last night. Tube strike day today, luckily it didn't effect me too much as I can get an overground train to Charing Cross and avoid the tubes.

Back pain - 5
arm pain - 6
left hip - 5

It's Friday!!!

It's Friday and I've had another week off work, adding to the other 3 I have had. Boy that will get HR all wriled up I'm sure. I don't really care too much anymore as my health comes first before my job, although I do still need my job as it doesn't look like I would get Disability allowance from the government without a fight. Why is it that when you are at work, they hate you being off sick with a disability and would rather you leave so they can get an able bodied person in instead and then when you haven't got a job and are trying to get benefit the DSS want you to get a job so that they don't have to give you any money. Just makes it difficult for anyone with a medical condition like AS as you are not wanted at work or out of work!!

Why on earth doesn't the government allow certain medical conditions like AS to get automatic qualification to getting all the benefits that are needed. I don't see why they can't do this, after all it is a recognised medical condition which causes a lot of pain and time off work. Why should we have to struggle in to work if in a lot of pain, discomfort, tired and have a number of awful side effects from the medication that we take. As long as you are seeing a specialist and they agree that you are not upto going to work anymore, this should enable you to get the benefit that you so badly deserve. I've worked for 20 years full-time struggling to work every day 5 days a week on an a 2 hour train journey there and back. I get up at 5.30am and come home at 7.30pm feeling knackered everyday.

I love my job, but if my AS gets worse, I may have to consider giving up. I'm trying to find a local job but can not get an interview yet when I put my AS condition down on the application forms.

Hey ho! I'm feeling about the same as I was yesterday. My back and shoulders are still stiff and painful and my left arm is still sore.

A little better today

I seem to be feeling a little better today. My left arm is finally on the mend and I can lift it out sideways better now. My hips are still sore but not stopping me from walking around the house ok. I still have some stiffness in my spine and upper back muscles. Luckily I have a massage this evening, so am hoping this will ease things and loosen all my muscles up.

Left hip pain - 5
Left arm pain - 7
spine pain and stiffness  -5

Visit to the specialist

Just been to see my specialist Dr Menon at Bognor Regis hospital as I have had a very bad flare up of my AS over the last 5 weeks on and off after having stomach flu. I started with just pain in my Sacro-illiac joint like I normally get with an attack which feels like something sawing through my hips every time I move, but over the last few days I have had pain everywhere, my spine is stiff and very painful, my left shoulder is so bad I can't lift my arm up, painful neck which I can't move and sore left hip which hurts to lift.

 I decided yesterday to try and get an appointment to see my specialist and was lucky enough to get a cancellation. He confirmed that I was having a very bad flare-up and that my inflammation level has reached 40 ! which is quite bad as it normally is about 10. After explaining my current pain list to him, he suggested that I need to try a new drug to help reduce the inflammation further. The drug is an anti-TNF drug called Adalimumab (Humira) and should block the action of TNF in my joints and reduce the inflammation. It will be taken by injection every 2 weeks which I will have to do myself, yikes!! But it should really help control my AS and stop me feeling so tired all the time.I shall be taking this alongside my methotrexate. The side effects are about the same as Methotrexate, likely to get more colds, viruses etc.. I'm just hoping this drug doesn't make me feel too ill as I still have to travel all the way to work and back 5 days a week. Anyway, this is a very positive step and other AS sufferers I have found on the web have found it very useful indeed in helping them lead a normal healthy life. So just awaiting the phone call from the hospital now to arrange for this treatment to start. I'll keep you posted.

I've been signed off this week by my GP to get the flare-up out of my system.

Pain in left hip - 6
Pain in left shoulder - 9
Pain and stiffness in spine - 6
Shoulders - 5