Newly diagnosed with oa & feeling lost

pixienix73

Hi, I have had knee pain for several years, but since Xmas it has become painful to walk & work so went back to the gp, back for more xrays....got asked to give him a ring for a chat so thought the xrays are obviously showing nothing serious again to be diagnosed with oa over the phone! :shock: he said I had oa in the right leg with water on the knee, and damage to the bit leading to the thigh & shin & oa in left knee with damage travelling down to the shin & ankle :?: He said for me to pick up a prescription for co codamols, naproxin & tummy beans & my xray results & he would refer me to the physio. Well that was nearly 3 weeks ago & I have lost my job as a community carer since I can't stay on my feet for 12 hours a day or drive to each patient I have been struggling all this year & had my hours reduced etc to try & acommodate my disability but I was needing more care than some of the people I was visiting
So thats it, I have just been left with a load of pills in a first floor flat I might add, waiting for a physio appointment, is this what normally happens???

bridesmum

Hi Pixie, I don't really know what to say except I'm sorry that you're in this horrible position. I have oa in my knees, hips and lower back. I also have fibromyalgia (for the last 12 years) I was also given co-codamol, naproxen etc and not much else. Unfortunately fibromyalgia isn't curable and quite frankly gp's aren't very informed about it and therefore don't really know what to do with us. With oa because there's nothing they can do other than issue painkillers until the time comes for replacement joints when they then refer us to orthopedic surgeons. I am on esa in the support group and find that many of the questions ask when you last saw a consultant, had treatment etc and because I don't regularly visit my gp or have consultant appointments it looks on paper as though there's probably nothing wrong with me. I hope you get your appointment soon and get your pain as under control as possible.

AmandaJones

Well, yes, unfortunately this is quite normal for osteoarthritic people, Pixie. Pain killers become an integral part of our lives , but in fact they assist us only in initial management and do have their own side effects on long term use. And not to mention they makes us unexceptionally, drowsy though out the day. Weather changes, flares can make life further worse .

However, you can ask for more natural options to manage your OA like exercise prescription, hydrotherapy, use of knee supports (braces) and lifestyle modifications. I hope physiotherapy works for you. It can definitely help you to improve pain and functioning of your knees, but it does require long term adherence :? . Good luck!!

Amanda.

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. I too have OA in a number of joints thanks to the damage caused by my other arthritis. It's in my ankles, knees, hips and elsewhere and is managed by my GP with anti-inflammatories, a tummy protector and pain relief. I don't take the anti-inflam very often because that is controlled by other medication but, when it's needed, I take it and can feel the difference.

OA does 'spread' because as one joint is put out of kilter we change the way we move thus putting other joints under pressure. There are around ten million arthritics in the UK and the majority of them have OA which probably explains the lack of professional excitement when it's diagnosed. It does, however, have a huge impact on us as individuals, because it affects so many aspects of our lives, what we do, how we do it and for how long. We cannot be 'fixed' as such, until things are bad enough to warrant joint replacement - I'm rather pleased that my OA so far only affects replaceable joints, but in the time I've been waiting for new knees it's spread elsewhere so now it seems daft to get new knees - I don't think I can cope with an oasis from pain.

Losing weight eases pressure on the leg joints but it may not ease pain levels. Keep the pain relief to a minimum, the pain will always be there and the more you try to subdue it the more you become subdued - I prefer to function (albeit in pain) so I can feel when I am pushing my luck with activities, the feedback is useful. I eat as healthily as I can, I steer clear of acidic foods because the acid can exacerbate the pain but if I fancy a pickle I have it - why deny myself? Exercise is useful for keeping the muscles which support the joints stronger so they can better do their job: non-weight bearing is the best, swimming or (if you can) cycling. Walking is high-impact and not very comfortable.

I stopped working a while ago but am fortunate in that my husband is still working. I have no experience of applying for benefits apart from DLA, I was awarded this back in 2007. I wish you well and please keep in touch: by no means are you alone ,as reading this forum will tell you. DD

barbara12

Hello pixienix73
And welcome to the forum only sorry you had to look for us in the first place
I have OA in quite a few joints, its rotten when you are first diagnosed and sorry you are having to give up work, you mention fluid so I would ask for an MRI or a referral to a rheumy,I have had OA for 4 years and only now after seeing a rheumy are they thinking its some kind of inflammatory arthritis...has for the pain meds I only take what I think ,just in case the day come when I need more..talking to us lots will help..I do wish you well

pixienix73

Hi, thanks for all your replies, I only take the pain meds when I feel in too much pain to cope, I don't like taking meds if I can help it. I think it is time I learnt to swim! I was told years ago I can't ride a bike due to slipping patella. The reason I have oa now I believe is due to several dislocations in my right knee & over compensating with my left leg when I have been in pain with the right one. What is concerning, since my xrays about a month ago, I have a swollen elbow & a lot of pain similar to than in my legs although I definitely haven't fallen or bumped it anywhere, also my middle finger is stiff & achy on my right hand & I haven't been sticking my fingers up at anyone or anything lately either Should I make another appointment with my GP or wait for my physio appointment & mention it there?

Slosh

Hi
My OA is in my neck but also causes pain in my shoulders and arms. Like you the diagnosis came as a shock but at least it was face to face, not over the phone! I'm still quite new to it all but just wanted to say welcome to the forum, I've found it an invaluable source of information and support.

barbara12

I would make another appointment for more test to be done rather than wait, some of the list to see rheumy are getting long..you can ask to be referred that is what I did after a lot of messing around..good luck let us know how you get on..

stickywicket

You do know that you have OA and it does have a tendency to move in on other joints so I think I'd use the wait and see approach. OA is normally treated by a GP and there is no real indication, from what you've written, that you have an auto-immune arthritis which is what rheumatologists deal with.

You could check things out with the physio when you get to see him / her and, meanwhile, make notes of pains and swellings and take photos too as you can bet your bottom dollar they'll all disappear like magic when you do see your doc again.

hileena111

Hi Pixie
Welcome to the forum.....You should find lots of information from the people on here......you already have.
Keep asking and talking to us.
I have OA but its my Hips, lower spine, ankle and neck I also have scoliosis.
The GP deals with OA until its time {if it comes} for surgery. That tends to involve painkillers and anti-inflammatories and a stomach protector.
I'm on paracetamol naproxen and codeine when it is needed.....I don't use that often and try to use as few paracetamol as possible.
Don't forget the more natural methods as well......Heat {or cold} TENS machine, topical creams can help sometimes. Exercises that the physio will give you to do.
Love
Hileena

pixienix73

Thanks all of you for your replies. I think I will just wait for the physio appointment. Does anyone know what help I might be able to get with my housing? we are with the council in the upstairs of a converted house. I am so glad my stairs are not communal :oops: What would I need to do to prove to them I am finding the stairs difficult? Also I can't use the bath as once I am in, I can't get out. I spoke to my housing officer & he just said well find an exchange then. I have actually been looking for 8 years for somewhere ground floor as I knew my knees would be painful one day, I just didn't expect it to be so soon. I am only 40 but feel about 140 right now!
I can't drive my car, it is too painful & I can't walk up the shop either, what a state eh! I am so grateful to my other half driving me to a supermarket & fetching me a trolley to walk round with!

Slosh

In regards to the bath. I have a shower board across mine I sit on to shower which helps but if I want a bath I always make sure my husband is on hand to help me out. Occupational therapists can assess housing to advise on adaptations but I've only ever dealt with them about this in regards to pupils so I don't know how you get referred to one and also what the situation is in terms of any permanent adaptations if you are renting. In terms of housing it's about getting further up the list in terms of priorities and being flexible about where you are prepared to live, I also sometimes have to support families with this, I would suggest asking your GP to write a letter on your behalf to your housing officer to support your case but unfortunately as we all know council housing is at a premium. Sorry I can't be of more help

pixienix73

Thanks all of u for your words of advice. It is most appreciated! I have been back to the gp as my pain relief isn't giving me any relief at all and it is waking me up through the night! He looked at my results & said I had moderate narrowing of the joint space on the inside of my knee & at the back of my knee was also damaged on the right leg, probably due to several dislocations before the oa set in. and just narrowing of the joint spacing on the left knee & some debris in both knees which was most likely causing me so much pain. I said about my housing situation & he said they don't get involved anymore, the council don't have properties to dish out these days so it is a waste of time. I have phoned the council again & they are allowing me on the housing list for a gf property, I have to fill forms in & wait to see where I end up on the list but it could take years to move. On a positive note, I have got myself a little part time telesales job working from home through a friend & sold my car that I haven't been able to drive for months which will save me £70 a month in insurance

stickywicket

Please excuse the brevity but I'm in a hurry. Could you ask the council about a stairlift? Or, as Slosh suggested, get an Occupational Therapist in to advise on adaptions needed? You can self-refer by ringing your council.

pixienix73

That is ok Sticky. I live in a prefab converted house, on the upstairs. We can't have a shower fitted as there is a fire risk to the people below if it leaked through & they don't fit stairlifts to our properties according to the housing officer I spoke to on Friday as they are not suitable. I didn't know u could refer yourself to an ot, I will look into that tomorrow, thanks.
It is a shame as we have 2 large double bedrooms, a good sized lounge & kitchen diner & a garden for our own use...I just struggle to get in & out of the flat! I doubt we would get anywhere half as nice & roomy on the ground floor!

hileena111

Hi Pixie {lol}
You self refer to your OT and see what she says.....you never know what they come up with. Ours is great. When I was first diagnosed I was in denial but was sent over to see her and she tried to give me loads of things but my attitude was {theres nothing wrong with me} I kept saying no thanks no thanks.....don't do that now.
It would be a pity to move from your house.....it sounds good.
I've pm'd you on the other site OK?
Love
Hileena

stickywicket

Like Hileena I'd get an OT and see what she (they all seem to be shes ) says. One possibility would be for you to move into a house, rather than a bungalow or flat, and then get a stairlift etc.

pixienix73

Hello hileena, fancy seeing u here I will see if I can get through to the ot, our nearest one is based at Hampshire county council & don't appear to answer their phones!