New to all this and not coping very well.

Kathyjam

Dear All
I am 52, live in North London and work in central London for a Local Authority. I started with knee pain about four months ago and first of all thought it was just aches and pains. I went to my GP recently and she told me that I had arthritis and had to lose weight. Given strong painkillers, Naproxen, and to try to exercise more (how as I am in agony?).
Since my visit, my knee pain has taken over my life, I have just taken on a new management post in the last few weeks and as you can imagine, the pain isn't helping.
I have gone from someone who loved a long walk to someone who is catching a bus one stop in order so that I have less pain. My pain is also now in my ankles (as well as my knees) and fitflops help at work (my job doesn't depend on me looking like a manager, thank goodness!). Outside, walking on the pavement is a killer and I am often in bed at 8.20 falling asleep as I hit the pillow. I realise the pain makes me so very tired.
Reading other topics, I know that I have nothing compared to others who are much more disabled than me. But I just don't know what to do next. I have made an appointment to see my GP to ask to see a Consultant (rheumatologist?) who could hopefully confirm what kind of arthritis I have.
Can I register as disabled? I can't see myself getting better at this point, even if I do lose weight. I woke up this morning in tears as I am frightened how worse this will get.
Will appreciate any advice and many thanks.

pinkbritishstars

Welcome to the forum from me :-) Sorry that you have had to find us though.

I have arthritis in both my knees and find exercise hard.

PM me if you need to chat.

take care

pink xx

Kathyjam

Thanks Pink. Reading the forums has been a huge help and good to know that I can come here to ask questions if I need to. It is such a relief to be with others who know what the pain is like and the different meds.
I do take a stomach protector with the Naproxen but I tend to only take the Naproxen first thing in the morning before my journey to work and around 4pm before my journey home.
I do hope my GP takes my plea for a referral to a consultant seriously.

stickywicket

Hello Kathyjam, and welcome from me, too. Please don’t apologise for having ‘nothing compared to others who are much more disabled than me.’ It isn’t, necessarily about the disability: it’s also, very much, about the pain. Pain can be every bit as disabling as lack of movement.

You are very new to all this and are, understandably, looking back to where you were until recently. This, I’m afraid, is probably Paradise Lost and you may never get back there. However, there are things you can do which will help.

Firstly, the meds. Many of us on here refuse to refer to painkillers: we prefer the term ‘paindullers’ as that seems more accurate. But, if the ones you have been given are not working well, there are always others. Some work for some and others for others. It’s a matter of trial and error.

Pain Clinics have helped a lot of people on here to deal with their pain. You could ask your GP to refer you to one. While he’s at it , he could refer you to a physio for exercises. I know you probably feel that exercise is the last thing you need but specific ones to strengthen the muscles supporting your affected joints will make those muscles stronger and more supportive and hence you get less pain. Swimming and cycling are good exercises too as the body is supported while the lower limbs are going through their paces. Hydrotherapy is good if you can get it.

A knee support might help as long as you don’t overdo it. It’s a matter of striking a balance so it supports your knee for the really tough stuff but is not left on for so long that the muscles stop working for themselves.

The pain in your ankles could well be referred pain from your knee. When one joint is affected we tend to walk differently to ‘spare’ it and that messes up others. But that doesn’t mean to say you also have arthritis in your ankles. You might :roll: , but the pain there might also be muscle pain.

Your GP might not be too willing to refer you to a rheumatologist given that yours does appear to be classic OA and, if it is, rheumatologists don’t treat it: GPs do. It’s worth asking though and/or you could ask for an X-ray but it might be seen as early days for that.

As I understand it, people don’t register as disabled these days. (I was registered way back in the ‘70s.) Some forms will ask if you regard yourself as disabled. That’s all.

Have you looked at AC’s info on osteoarthritis? It might help. I hope so.

elainebadknee

Hi Kathy

Welcome to the site and for telling us your story....
Its annoying isnt it when you get new pains and one of the first things they tell you is to lose weight, when youre in pain the last thing you feel like doing is running around like a gym bunny do you? Ive had to lose 3.5 stone in order to be considered for total knee replacement surgery and no doubt it is better for me not to lug it all around but do i feel brilliant and bouncing with energy like lots of publicised dieters claim? NOPE!!!
You didnt mention the strong painkillers did you or did I miss that? Naproxen was mentioned and thats an anti inflammatory that works for lots of people, not for myself however.....It would be good if you could like you say put a name to your condition, I think its better to know what youre battling, the unknown is more difficult....Good luck with that!
Sounds like work is a good place but like you say youve gone from liking a walk to going on the bus, well if needs be, you know....Would it be worth getting a stick or something to help you? I know some dont like them but once youre used to them they can help...I noticed one thing too in your post that may not help, just a thought...Your fitflops, they dont really give you a lot of support and maybe something more supportive might help a wee bit?
Re registering as disabled, why not, give it a go, if you mean benefits....Sure local government would advise you? Dont think there are people worse off than you, its your own pain and youre entitled these feelings whilst your body changes and adjusts to its new settings!!
I hope you get referred soon to a rheummy and update us to tell us what happening....

Elainex

Ps...The bus is probably the best mode of transport in London at mo what with the Olympic Lanes...LOL!!

Kathyjam

Thanks, everyone . Your replies have really helped me mentally today and I can now see that it is about managing the pain rather than hoping (I wish) that it will just magically disappear because I have to accept it most probably won't.
Also, thank you for the practical tips around meds and shoes. When I return to my GP on 6th August, I know I now want to ask to be referred to the nearest Pain clinic. Will let you know how I get on.

dreamdaisy

The pain won't disappear (alas!) but there are ways to cope with it, manage it and (every now and again) ignore it. EBK is spot in with the advice about a stick (hold in the opposite hand to the affected knee) and wearing better shoes - ones that reduce the impact of the foot hitting the hard ground are good and even better if they are 'attached' to the foot via a strap or laces. I love my Crocs for just that reason. Other joints may well be twanging because we do alter the way we walk to try to ease the strain on the affected knee.

As for losing weight, well, it can be done: a wheel-chair bound lady on here lost a considerable amount - a figure of five stones is bouncing around in my mind but I cannot remember if that is correct! Have you thought about trying swimming? That is a good low-impact form of exercise and works the whole body. Cycling is another - could you bike to work? In my good pre-arthritis days I used to cycle from Putney to Knightsbridge, then after that from Ipswich to Woodbridge.

There is nothing more miserable than the relentless, grinding on-going pain caused by OA. I had twelve years of pain thanks to the auto-immune arthritis I began aged 37, then the nature of the pain changed, it became hotter, deeper, fiercer and turned out to be caused by OA in my knees and ankles, there as a result of joint damage. It's horrid but I can cope with it by pacing myself and using distraction techniques - the telly, doing mental puzzles, coming on here all 'ease' it. But if I sit and think about it ye gods it worsens! It takes time to adjust and to discover your coping mechanisms and in the meantime we're here to listen and help as much as we can. I wish you well. DD

LolaCrayola

Hello. I am 42 and also struggle. Return to your g.p. and take a friend. Ask want sort of arthritis you have. Ask if drugs for chronic pain will help you, ask to be referred to a specialist. I have OA so my specialist is an Orthapaedic man. Have you had any tests or x rays? Ask for a referral to the pain clinic and explain how your quality of life is affected.

I am not overweight. I was told to resume my normal life, not sure how? needless to say I have been referred back, this time for pain in three places instead of the one they dismissed. I expect they would blame my weight if they could.

Hope you feel better soon.

Helenbothknees

I don't want to raise your hopes only for them to be dashed again, but.....

In 1998, and just a couple of years younger than you are now, I had very similar symptoms. I was on sticks, in agony with knee pain, hardly able to walk at all. It had happened quite suddenly. I too refused to believe it was osteoarthritis, and demanded of my GP that I see a specialist. He said it was a waste of time, but made me an appointment. Meanwhile, I tried every complementary therapy I could think of, and believe it or not, something worked. The pain gradually went. I couldn't go back to walking 20 miles, but I could certainly manage 3 or 4 miles, and in everyday life I had little pain at all. In fact, I cancelled that specialist's appointment (bad idea; I've always wondered what he'd have made of it all).

I carried on that way for about ten years, and then the pain started to come back, but slowly and gradually over several years. This culminated in my having a bilateral TKR exactly four weeks ago.

I've since read that the menopause can drastically affect OA in some cases. I wonder if it was that with me. At the time it appeared to be crystal therapy, which I hesitate to even post here as it seems so weird and so unlikely. People laugh and poo poo it when I tell them. But I only know what happened.

Please don't expect something similar to happen to you because it does seem to be very rare. Also, as you'll have gathered, it wasn't permanent (but it gave me 10 good years). But your case is so like mine that I felt I ought to tell you not to give up yet!

salamander

Hi there, I'm unclear as to whether you know for sure that you have OA. If you have another type of arthritis there is quite a lot that can be done to manage your pain and even give you some relief from it. Not everyone has pain for life, quite a lot of people I know with RA (for example) suffer very little pain.

Even if you have OA, there are new treatments and massive of research going on. My mum had OA in both knees but managed very well for years and had two knee replacements eventually. But she also had steroid injections periodically in her knees which helped quite a lot.

As for registering disabled - you can do that with your local council but it doesn't really mean anything. You can apply for DLA, a Blue badge, etc but you don't have to be 'registered disabled' to do that. Just download forms from internet and apply.

barbara12

Hi Kathy
Sorry I cant add anything to what the others have said, but I just want to offer my support, and just talking to us will help you cope, its surprising how helpful it is talking to people that understand some of what you are going through can be.
The one thing I would say, is try and get a good physio, that can take through the exercises you should be doing, especial with the knee, the stronger the muscle the more support you will get.
Oh sorry and welcome to the forum from me xx

Kathyjam

What a difference a day makes! I believe I have OA but will ask the GP on 6th August. I also plan to try an alternative therapy or two, a friend recommended acupuncture for pain management.
Looking back I have had quite a few 'signs' - had pain in my hand for many years when the weather is damp but that I could live until my knee. I plan to be optimistic but realise that the pain may not go and I have to live with it. But I am a fighter and this won't break me. I realise I am at the beginning of a journey that many of you have been down.
I have also joined a gym to tone up the rest of me.

bubbadog

Hi Kathyjam, I wanted to say Hi and welcome to Arthritis Care Forum!

Helenbothknees

Acupuncture is good; never worked for me, but does for a lot of people. Definitely worth giving it a go!

tjt6768

Hi Kathy, and welcome from me too.. It's a terrible disease eh?
I am sorry that you have had to find us but it's a great place to be, we are a friendly bunch of Arthurites lol

I am a knee sufferer too, as well as the spine, hands, wrists and elbows.. Oh, shoulders and neck are joining in now too :roll:


Hope that you have a good day and look forward to seeing you around

knuckleduster

Hello Kathyjam

Welcome to the forum and you will find us a friendly bunch, who will from time to time help you to laugh.

Hope you get some answers from your doctor at your next appointment and he/she will send you for x-rays or tests to see what the problem is.

Janet x

Kathyjam

This week I have been taking care of myself a bit more but had a daft idea to go to Stratford station today in order to get to Hackney. Daft silly idea, caught the lift but then had to walk for ages where there was a queue for the lift and about 40 mothers with pushchairs, so decided to walk down all the steps. I know, I know, there is an Olympic games on but hey, it seemed like a good idea at the time.
I have joined a gym and start next week. I know I am going to be careful what I do whilst I am there (any tips gladly appreciated as to what to focus on) and the treadmill is out for awhile yet.

Kathyjam

I really don't want to get a stick but can see the sense in having one at certain times and I realise that one day I may have no choice. Any ideas of where I can buy a nice design? I have looked on ebay but prefer the ones for sale on Amazon. Would appreciate if someone could tell me if there are any specialist websites which I am sure there are.
Much appreciated.

stickywicket

To be honest, in your situation, I'd focus on my own body and what it's saying to me. The best way to start exercising is little and often and, in a gym situation, that's not always easy. There's the temptation to keep going because (a)you've travelled there and (b)you've paid. Please be very careful not to overdo things at first while your enthusiasm is high as you'll soon give up if you make things worse. Stop when you feel you can still do more. Once you're more aware of what your body can/can't do, you can start to push it a bit further. Good luck!

As for a stick - it's very important to have it at the right height for you so you might be better getting one from a disability shop (which would measure you) rather than the internet.

Kathyjam

Thank you sticky wicket, I realise I have a lot to learn but it is all part of the acceptance of the diagnosis and the pain. Reading other parts of the forum has been an eye opener and it is great that there is a real community feel from others.

twobob

hiya ,, i am also new to this, as this is the first forum ive ever used, so here goes!. i am 53 and just diagnosed with arthritis, following physio instructions with spacific exercises, swim five times a week. right hip so painful i could scream, i read that you refer to them as pain(dullers), well thats all they do for me too. had to retire recently to care for my disabled husband, so im kind of struggling. i do enjoy reading the posts and wondered if anyone could offer advice.
kathyjam, its nice to see that you have recieved some helpful tips. i can understand how difficult it is for you, having been so active. keep soldiering on.
regards
twobob

stickywicket

Hello twobob. It's good to meet you. This is my first - and only - forum too. Yes, I'm in the 'painduller' camp as I think it's a bit unrealistic to expect them to remove the pain entirely. I have to strike a balance between pain and being able to function, which I can't if I'm zonked out on pain relief.

I'm sure the swimming will be good for your hip as long as you build up gradually and also I believe (but don't take my word for this) that breast stroke's not a good idea.

I can well see that things will be hard for you if you have to care for your husband too. I hope you both get some help in the way of aids and adaptaions to your home.

If you paste your post onto a new thread you'll find more people will see it and respond. Good luck!

twobob

hiya stickywicket, thanks so much for your reply. i think your right that maybe we shouldnt expect them (paindullers) to remove the pain entirely. and yes it does zonk me out too. trouble is my husband is blind so i need to be alert and functioning most of the time. i am enjoying swimming, as you thought breast stroke doesnt suit, i keep to doggy paddle style. probally looks funny to others but im getting a lot out of it. i guess it is about striking the balance, so im setting about doing just that.

regards twobob

stickywicket

A great attitude and plan, twobob! It doesn't matter in the least what it looks like if it helps you, and striking a balance is sooo important. OK, we all deliberately get that one wrong at times :roll: but a bit of fun helps a lot too. I'll look forward to seeing you around the forum.

elainebadknee

Kathy

Re the gym. When you start and they take down your personal detials they should tailor a programme for you mobility needs....For your knees (isnt it) you could go on treadmill but dont run just walk and dont go too fast...Id say cross trainer and recumbent bike are best too as they are non weight bearing machines...There are lots of things in the gym including weights and rower, seated rower...I couldnt do the hip abductor that hurt me lots....
Re the stick i only got mine off my brother, pinched his hill walking one..You can get from disability places i just use walking pole...

Good luck!

Elainex

hileena111

Hi Kathy
I dont think I can add much more.
Most GP's have a programme where they can refer you to a gym. You pay slightly less, you get a special instructor who treats people with disabilities and knows what to do and what not to do. Might be worth a check to see if your GP does this. Healthy Life I think its called.
As for a stick.......a disability shope is the first place to start to get one measured for you but I bought mine from a shoe shop Timps++s £10.....because I didnt want one and refused to hand out a lot of money for one. If you do get one and poss decide to pay out a bit more money for one because it will be part of your wardrobe there is a website....{this might be removed from the post...pm me if you want to} Switch Sticks......never bought one yet but love browsing the site
Love
Hileena