confused

sweetkitten

hi all , new here and my first post

im wondering if anyone can help me understand whats wrong with me .. i went to see a rhummy a year ago nearly who said i had peripheral spondyloarthropathy ( no idea what this means ) i have just been taking the medication given (plaquenil) and due to go back to see him mid august, He also wrote that i had OA in the knees but quite impressive that i had traction osteophytes with evidence of previous enthesopathy.(again no idea what it means)

Over the last year i have been back and forth to my GP whom prescribed naxopram or diclofenic and always tell me the main cause of my problems is my weight... yes im overweight, but i try and keep as active as i can, the more exercise i do the more pain im in!

The last 2 weeks have been a nightmare, it takes me 5 minutes to walk upstairs as the pain in my knees is unbearable, im at the end of my tether and dont know which way to turn.

I dont know if im entitled to DLA or any help from social services with anything.

stickywicket

Hi sweetkitten. Welcome to the forum but I’m sorry you had to find us and I’m sorry you’re in so much pain.

Your rheumatologist has prescribed plaquenil because you have an inflammatory form of arthritis (presumably the spondyloarthropathy) but you also have osteo-arthritis in your knees. I don’t know if there’s a connection. There are quite a few of us whose inflammatory arthritis has led to osteo, but usually because it wasn’t treated quickly enough with the right meds. The other long names on your knees :roll: are, I think, just describing the usual sort of changes that occur with osteo.

The plaquenil should help control your spondyloarthropathy but won’t help the osteo pain in your knees. Your GP has prescribed two of the most usual anti-inflammatories for that but it might be that you need some strong pain relief with/instead of them. I don’t think it will be much help you’re hanging on until the rheumatology visit because rheumatologists don’t deal in osteo, although he/she might X-ray them. (I guess that’s already been done.) Or referral to a Pain Clinic might help.

I know when the pain is really biting the last thing you want to be told is to exercise but strong muscles do support the joints so that they hurt less. Maybe your GP would refer you to a physio who would give you some specific exercises to do (Or see AC’s booklet in the ‘Publications & Resources’ section.) Swimming is good too.

I’m sorry, I can’t help with the DLA and Soc. Serv. thing though you could ask to see an Occupational Therapist. Try our helplines.

I hope things will improve soon. Do keep talking to us.

elnafinn

Hi Sweetkitten

First of all welcome to the forum. I am sorry to hear that you are having pain and problems when using the stairs.

I think that it would be a good idea, when you next see your GP to ask him to explain the rheumatologist's letter to you. He is the best person to do this or even better, wait until your appointment next month and ask the rheumy himself. GP's etc often do appear to put all the blame on weight - it does not help but it is a vicious circle and when one is less active the pounds pile on and then there is the comfort eating on top of that which we all do to varying degrees.

Your GP can refer you to physio for exercises and in some areas a gp can send you to the gym for a number of weeks and/or the local pool. Occupatonal Health may be able to help you with grab rails and things like that. I will have to pass on your question of DLA.

I googled peripheral spondyloarthropathy. It said, the major symptom in most patients is inflammatory low back pain. This is particularly seen in axial spondylarthritis. In a minority of patients, the major symptom is pain and swelling in the arms and legs. This type of spondylarthritis is known as peripheral spondylarthritis.

Do keep in touch and let us know how you go on.

Elna x

barbara12

A very warm welcome from me,Sorry I cant add anything to what the others have said, but I can add my support.
I do hope you stay with us, its good to talk to people that understand some of what you are going through xx

hileena111

Hi Sweetkitten
Welcome to the forum.
I cant really add anything much to the info you have already got from the others
Keep us up to date on whats happening
Love
Hileena

Avrielle

Hello. I have read your post, which spurred me to write an in-depth guide to claiming ESA.

http://www.arthritiscare.org.uk/forums/living-with-arthritis-forum-f8/claiming-esa-everything-you-need-to-know-t33504.html

I think you ought to be entitled to it, if you are not currently working. There certainly would be no harm in making a claim. The worst that can happen is that they say no.

Same with DLA. However, I would not put in a claim for both DLA and ESA at the same time. Attempt one and then the other. If my memory serves me correct, I believe you can claim for DLA on top of ESA if you are already recieving income-related ESA. And (don't quote me entirely here...) that you can also claim for DLA if you are currently working. But you disability or illness must be severe to be entitled to DLA. If you are unsure, ask at you local Job Centre Plus and they can give you information you need.

There is certainly no harm in making a claim to either though.

As for social services, each tends to be different in each area. Since Social Services are funded by the local councils, some areas may offer more than others. To find out what you are entitled to through social services, just visit, telephone or make an appointment to talk to them about the difficulties you are having. You may be refered to an occupational therapist who can assess your needs. You may recieve equiptment to help you with your daily needs, and they may offer a carer to help you if you are struggling a lot. Some of it may be funded by the council, but some you may be required to fund yourself.

They will talk you through it and give you your options on what they can help you with. Definately worth talking to.

In regards to benefits. If do not feel confident, then if you have a local CAB, then they can help you with what you need to know about benefits you are entitled to and can help you through your claim too.

Wishing you all the best. xxxxx

sweetkitten

Thanks all for the help and kind words, i'll be sure to stick around and gonna spend some time reading up on other peoples posts