Help Where do I start, what do i do.

ebtlover

I am 38 and I have suffered with lower back pain for around 10 years now which has got progressively worse during that time. I thought this might have had something to do with my bed as it was usually worse in the mornings, however, investing in a new bed failed to help and I continued in pain. In 2004 I noticed that I was getting more joint pains particularly in the feet and hands then towards the end of 2006 the pain got so bad it was unbearable and walking even the shortest of distance caused distress. My mum died unexpectedly in November 2006 which was a very stressful time and from this point on my problems seemed to snowball. By now I was getting pain in my back, neck, hips, knees, hands and feet. I visited my doctor about the pain, particularly in my feet as walking was a problem and he prescribed co-dydramol (I am unable to take anti-inflammatory pain killers as I am asthmatic and these are an attack trigger) and he referred me to a Rheumatologist. I saw my rheumatologist in early 2007 and she said that it appeared I had Psoriatic Arthritis and hypermobility. After a number of tests I was prescribed Sulfasalazine but unfortunately I had an allergic reaction to these and was forced to stop taking them. Since this time I have had steroid injections every three months but these have unfortunately not helped and the pain is still getting worse. I struggle to get up stairs now and am unable to manage all the chores that I could do before not just because of pain but also because I constantly feel so tired and drained. I work full time as a bookkeeper and am finding it so hard to get through the week because I just feel so exhausted. I often take a half day or days holiday because of this and even after having a three week break over Christmas I returned to work drained. I wanted to try for a baby, which also affected what medication I could take but I have now decided that it would be unfair when I can’t cope with the things that I have to do now let alone with a baby’s needs. I have also been referred for physiotherapy hydrotherapy which I am due to start in a couple of week’s time. Please can someone tell me if there is anything else I can try to help with my pain and fatigue it is really getting me down and because I feel so terrible all the time my social life is non existent. Does anyone know if I can get any financial help that would allow me to work fewer hours? All advice would really be appreciated as I feel like I’m getting to the end of my tether.

Wonkylegs

HI & welcome to the forum (though I'm sorry you need it!)

It can seem impossible to cope with everything when you are really struggling - but I can assure you that with support you can amaze yourself with what you can actually do, once you have some tricks up your sleeve.

Firstly, the physio should help you, with ideas on the best way to do things to keep your muscles strong.

Secondly, have you seen an occupational therapist(OT) ?
if not I would strongly recommend that you see your GP and ask for a referral. Alternatively in your area you may be able to refer yourself through social services. This seems to vary depending on where you are in the country.

I was visited by and OT and given some things to help me with various basic tasks (bath board, cutlery grips, chair raisers) but also a lot of invaluable advice on how to PROTECT my joints so that I didn't put them under too much strain. It was one of the best things that happened for me seeing the OT. They can also help with work situations and suggest adjustments that you could make to your workstation etc so that you are in the best position to be able to cope.

I would also recommend that you contact the Arthritis Care helpline on 0808 800 4050 or email/pm them through their forum links. There is lots of stuff they can send you that will give you ideas for how to cope with all this.

hope that helps, and do remember that everyone on here knows how hard things are at first, and will ahve tips for you.

best of Luck!!!

mandy_b1967

I am sorry to hear you are feeling so lowsy at the moment. I would suggest you try employment Support and work allowance. I am not sure how it works but I know that you can claim while working. You might also be able to get Disability living allowance. Try your local job centre if you need help
Mandy

lindalegs

Hi Ebtlover and welcome to the forum.

I'm so very sorry that you're poorly at the moment and would like to reassure you that you're arthritis will begin to get better, it comes and goes naturally and when your rheumy finds the correct medication too this will help. The problem is that at this point of time, for you, it all seems a long way off.

Pain as well as the disease itself is so exhausting plus you're having to cope with the life changing problems your PA and hypermobility is throwing at you.

My advise is to rest as much as you're able and I would have said hot baths help with the pain of your PA but this could aggrevate your hypermobility - from what I understand ice packs will help with that.

The DSS should be able to advise you about what benefits you can claim so you can cut down your hours of work but others on this site may have some other suggestions where you can go for help.

Hope this helps and that you start to feel better very soon

Luv Legs

ebtlover

Wonkylegs wrote:

HI & welcome to the forum (though I'm sorry you need it!)

It can seem impossible to cope with everything when you are really struggling - but I can assure you that with support you can amaze yourself with what you can actually do, once you have some tricks up your sleeve.

Firstly, the physio should help you, with ideas on the best way to do things to keep your muscles strong.

Secondly, have you seen an occupational therapist(OT) ?
if not I would strongly recommend that you see your GP and ask for a referral. Alternatively in your area you may be able to refer yourself through social services. This seems to vary depending on where you are in the country.

I was visited by and OT and given some things to help me with various basic tasks (bath board, cutlery grips, chair raisers) but also a lot of invaluable advice on how to PROTECT my joints so that I didn't put them under too much strain. It was one of the best things that happened for me seeing the OT. They can also help with work situations and suggest adjustments that you could make to your workstation etc so that you are in the best position to be able to cope.

I would also recommend that you contact the Arthritis Care helpline on 0808 800 4050 or email/pm them through their forum links. There is lots of stuff they can send you that will give you ideas for how to cope with all this.

hope that helps, and do remember that everyone on here knows how hard things are at first, and will ahve tips for you.

best of Luck!!!

Thank you for this, I am seeing my doctor again next week and will ask about OT.

Unfortunately my employers are not sympathetic to my situation and seem to be getting the hump with me for having to take time of for appointments and when I am feeling too drained I have to make an excuse to take holiday. I really want to change my job but I think this is going to be easier said than done as I can't see that many employers would be too keen to take someone on with problems. I know that employers are not meant to discriminate but unfortunately they do.

woodbon

Hi, Sorry your feeling so bad and worried about work. Have you discussed this with your GP? He/she may sign you off sick for a while so you can have some rest from all the stress. The Jobcentreplus web site can give some information on your rights and help you find out about benefits and maybe suggest how to find a suitable job. Sorry I cannot be more helpful, but the system has changed recently. I think though the emphasis is on keeping people at work, where possible. Maybe ring your local Jobcentre or CAB. Best withes, Sue. xxx

Wonkylegs

[/quote]Unfortunately my employers are not sympathetic to my situation and seem to be getting the hump with me for having to take time of for appointments and when I am feeling too drained I have to make an excuse to take holiday. I really want to change my job but I think this is going to be easier said than done as I can't see that many employers would be too keen to take someone on with problems. I know that employers are not meant to discriminate but unfortunately they do.[/quote]

they can't ignore your illness! it isn't your fault!
There is a good AC booklet about working and arthritis, and they could also help you with info for your employer so that they have a proper idea of what you are dealing with and how this horrid disease affects you every day.

Don't let them walk all over you - you are not on your own and you have rights!