New here looking for friendly support during diagnosis phase

Avrielle

Hello. I'm 24 and I went to see my GP yesterday about my sore knees. One knee is worse than the other and has been worsening at a rapid rate over the past 3-4 months. Now I find it difficult to manage the pain and I'm realising that this isn't just a general ache and pain that everyone gets from time to time. I'm finding it very difficult to get in and out of a chair, or on and off the toilet - which is rather embarrassing - and other simple day to day things that (as I'm sure you will agree) others take for granted in their daily lives.

I already suffer from Complex Regional Pain Syndrome (nerve damage) in my foot as result of an accident causing ligament damage I had two years ago, but is only localised in my foot. But I have been signed off from work since I had that accident as I find, and still find, it difficult to walk and stand on my painful foot. I already walk with crutches and so this does take some pressure off my knees, but walking with crutches regularly really hurts my shoulders now, so I avoid it when I can.

I went to my GP yesterday about my knees as they are clearly getting worse. I have already had blood tests and rheumatoid arthritis has been ruled out, but he told me yesterday that he was pretty sure that I have some form of arthritis. Despite my shoulders being in pain, however, he said that he did not think that it would be fibromyalgia. So I am being reffered to a rheumatologist as I speak, but will be around 3 weeks before I see him.

I cannot lie. I am scared. It's a horrid thought that it could be something incurable, or something that will only steadily get worse over time.

I care for my partner who has Rheumatoid Arthritis, Fibromyalgia and a few other health conditions. He has been a sufferer for over 4 years now but he is in intense pain all day every day and he still is struggling to come to terms with it. Seeing how it affects him really worries me as I fear I could become like that too and have no one to care for either of us. I cannot talk to my partner about my fears and concerns because he is still in the phase of "Nobody understands the pain I'm in all the time" and when I was upset and tried to talk to him yesterday about it, it was clear that he didn't want to hear it.

I have tried and tried to help my partner as best as I can over the years, but you can lead a horse to water, yet you cannot make him drink.

He sees a specialist around once a year, which is far too infrequent as far as I'm concerned, but the specialist is not very helpful to him at all and claimed that the damage done would "get better", which I was very annoyed about. I have tried to get him to return to his GP, to try and be reffered to another specialist, to have his medication managed, even just trying to get him to go and speak to the parmacist, but he refuses to have any of it. He has blood tests every 6 months, but the surgury seems to forget and not put his appointments in automatically each time. But he has a big phobia of needles and will not make any attempt to put himself forward for it, so I have to phone the doctors myself and arrange for them to contact him with an appointment without him knowing that it is me who contacted them.

It's a pretty tricky situation and it has reached a point now where I have pretty much given up and just letting him get on with it. He doesn't seem to want to help himself, and it was understandable in the beginning because it was a real shock for him and difficult to adjust and he had a dark shadow of depression lingering 2 steps behind him. But after 4 years and me doing my best to help him and persuade him to get treatment and help he needs, he still refuses. So it really has reached a point where I just leave him to it and wait until he finally realises that there is help available, and that his meds should be increased, etc etc. Dunno if it will ever happen, but it does seem to be his choice and he can open the door to his cage at anytime.

He just doesn't want to help himself, and I have done all I can do. Perhaps if he sees my experience to come with arthritis, he will understand that things can be done and it isn't all doom and gloom and pain and immobilisation. At least, I'd like to think so.

Anyway...

I have already been in touch with the social services to try and get some extra equiptment and am awaiting a reassesment of my needs, but could take some time as I received a letter to say I'm on a waiting list.

I'm just looking for a sympathetic ear and some support to help me through this shock and rough time.

xx

fowls48

Hi Avrielle


Welcome to the forum , You Poor love i felt the same i was scared , the people here are Great .I have Ra just been diagnosed at 48 yrs .You poor love your Partner is also suffering How awful for you both . 3 weeks is along time to wait but hopefully it will come round quickly , Hopefully they can sort you out ASAP .
You should get some more responce later, do not despair, a lot of the peops are feeling crook today but they are a great bunch and will help all they can .Sorry i have not been of much help , but i do know how you are feeling .


karen xx



karen xx

dreamdaisy

Hello Avrielle, welcome to the forum and I am glad you have found us - I hope we can help.

One of the secrets towards coping with arthritis is to be honest with oneself (I am thinking of your partner here). The ostrich approach does not work, i.e. if I do nothing about this and pretend it isn't here it will go away. Nobody can help someone until they a) start to help themselves and b) want to be helped (those two things don't necessarily go in that order). I reckon you've done your bit - it's time for him to grow up and start taking responsibility for him, his meds and treatment because you have another situation to be dealing with - yours.

You are being referred to a rheumatologist and that is a good thing. This would indicate that your GP is thinking in terms of an auto-immune inflammatory arthritis and they are the right people to deal with you, GPs usually manage osteo-arthritis which has a different root. It can take time to diagnose what form of arthritis is occurring, there are a staggering number of variations on this particular theme but at least you are not having to wait too long to see someone (I know, I know, it will seem like an age to you but believe you me three weeks or thereabouts is quick.) There are sero-positive kinds (i.e. a positive rheumatoid factor) and sero-negative sorts, I have one of those. What exactly is going on with your knees? Are they swollen? Hot to the touch? My problems began with one very swollen left knee, it ended up 27" round. :roll:

Don't let your partner's experience of RA colour your view - everyone's arthritis is different, it differs in how it develops, what it affects and in how each individual copes. Yes, this could well be the start of a rather tricky road for you but it's one we have all trodden and we are familiar with it. I am not sure how much support you will get from your partner but we will do our best to encourage - we're always here to listen and the Helpline is a good source of support and info too - for both of you. I wish you well. DD

stickywicket

I’m glad you made it over to this forum, Avrielle.

I think you are wise beyond your years when you say your partner can ‘open the door to his cage at any time’. You are also right when you say ‘Perhaps if he sees my experience to come with arthritis, he will understand that things can be done and it isn't all doom and gloom and pain and immobilisation.’ I do hope so.

I quite agree with you though that seeing a specialist only once a year is far too infrequent when his disease appears to be not in control. Damage done to bones will never ‘get better’. (One look at me would convince him of that ) He may well be afraid of blood tests but I’d guess he’d be more afraid of the problems that could arise if he doesn’t get his bloods done regularly. I have to book my own at our surgery. I’ve been on my meds for years with virtually no problems but I still have to go at least every two months.

A rollator is a bit like a trolley but it’s a walking aid. It has 3 or 4 wheels and some have a seat for if you have to stand. Quite a few on here use them. As for a cushion – I’ve been known to take the ‘seat’ out of an unused armchair to place as an extra one in my own. Or you can buy them. Even a pillow would help. You can also buy things that go on the feet of chairs to raise them up but not all chairs are suitable.

I hope you’ll soon have some decent meds and will feel much better. Getting the right combination of meds, rest and exercise takes some sorting out but you sound to have the right attitude and I’m sure you’ll make it.

Avrielle

Thankyou very much for your replies. It does mean a lot to me that there are people out there who will listen and understand. The internet, contrary to popular belief, seems to be far more filled with caring people than I can find in real life! So I am very happy to read these posts and see that others are gaining support and information aswell.

My partner is often very good to me and he cares a lot about me, but when things go wrong or something happens to me that he cannot or will not (i'm not sure which to be honest) understand, then I can feel a bit iscolated. This shock of being told the high likelihood of having arthritis at 24 is one of these situations where he seems to cut himself off from. Doesn't want to hear it. He will give me a cuddle, but I'm getting that glazed look and seemingly selective deafness from him if I say anything about my fears.

It was the same back at the start of this year when my Gran died and it took it's time to sink in and for me to come to terms with it. It still hurts a lot and I'm seeing councelling, on and off, for my bereavement. But I cannot get any true support from my partner.

Sorry... this is turning in to a sort of rant about my partner and not about myself, which is why I am here.

I am scared, and I am upset, and there is a fear creeping through me. It doesn't help that I haven't been given any indication on what type of arthritis I might have, so I cannot gain any knowledge on what may be wrong with me...

I hate to presume on medical matters without a doctors input, but I would probably say that mine is an inflammitry type as if I bend or use my knee a lot then it turns bright red/orange and burns and the heat can be felt through clothes. It doesn't grind when I bend it, but yesterday I could feel it clicking when I moved it, which probably isn't a good sign.

I have had blood tests and RA has been ruled out. But as has been said, there are so many different types that ruling out one or two is not really a massive help! The thought of waiting for a diagnosis and being left in some sort of limbo is a bit scary as I assume the diagnosing procedure will take some time too, and the not knowing is going to be very little help to me as I find my daily difficulties increasing as days pass....

I feel like such a lost cause, even though I know fine well that I'm not the only one who goes through this. Feels awfully selfish of me...

Avrielle

Eek! A rollator sound like a scary thing to go out and about with!

In the beginning when I had the injury to my foot (which still causes lots of pain) I was told that I should be in a wheelchair as walking on it was making it worse. They even gave me the wheelchair, trying to force me to use it, but I kept it for a month, unused, and then returned it. Reason being that I live on a third floor flat, and the entrance is on a hill, plus my home has a narrow hallway and doors so using a wheelchair on my own proved useless!

I used to be very strong for a woman and my strength could put some men to shame. Going out and about in a wheelchair or using a rollator seems like a smack in the face to me. I know that it isn't "weak" to use equiptment you need, and perhaps makes you even stronger to be brave enough to say "Yeah, I need this at my age... what of it?" but I just don't feel that they would be very practical in my day to day living, as well as feeling a bit shamed by using such mobility equiptment.

But if it does reach a point where I can no longer use my crutches, then I will consider alternatives. But just not quite yet. I'm not ready.

valval

hi welcome it is scary when you find what you have has no quick fix. but the meds these days work great it takes a while to find what best for you and i still have no name for my arthitis apart from inflimation. i do get the feeling your oh might be more worried about how you being bad might affect how you look after him but he is an adult and will have to sort him self out, you have to look after you and rest when you need to.
it will not be fast getting sorted it try this go back see how it helping add something else or change to another but there is light at the end of the tunnel so stay strong we are here to listen and help where you need it i still go rhummy a minimum of twice a year so feel your oh should be getting more help but you often have to tell them how bad things are and perhaps he is not telling the truth about how bad things are.
val

Heather65

Hi Avrielle and welcome
,gosh it sounds like you are having a realy hard time at the moment such a lot going on ,lets hope that when you get your appointment they can give you some help ,yhere are many people on here who can sympathise with you and other you some advice
Heather

youlemming

Just wanted to say Hi but I can't add much also being quite new to all this.
Hope you get some answers and help when you see the consultant.

stickywicket

You might not get a diagnosis straight away but, if they know it's an inflammatory form of arthritis, I think I'm right in saying that the treatments are much the same so you probably won't have to wait too long for that.

As for rollators, crutches and other aids - in my younger days I always used the yardstick that, if it simply made life easier I wasn't much interested but, if it enabled me to do something I couldn't otherwise do, I was very interested

suzygirl

Hi and welcome from me. You certainly have a lot to contend with. I have a 3 wheeled walker, I was offered it 5 years ago when I first became ill. I refused due to sheer embarrassment. :oops: 5 years later I was struggling so much to get out I asked for one :shock:

They are enablers, as SW said. It enables you to live a near normal life. I hope you can get on to meds soon that will help you. You are going to need help with caring for your partner, so I hope that Physio and OT are involved, they may be able to help you with the difficulties your flat presents.

Take care

barbara12

Hi Avrielle Welcome to the forum
Of course you are scared, and I really do feel for you having so much to deal with, I do hope your OH accepts what he has got or at least any help that is offered.
You take care and we are always here to talk to xx

skezier

Hi Avrielle

Welcome from me as well. Thats a lot to deal with you have there and I hope they will hurry up and sort out the meds side. Sometimes the treatment can work really well and quickly and I so hope you will both be in that group of folks.

You have had so much happen here that I wonder if talking to the helplines might help you? there is a phone number at the top of the page and they are very good.

I so hope things will get easier for you and nice to meet you. Cris x

mig

I cant offer all the wise words the others have offered you but i can listern and symperthise,some times this is all we need ,will be thinking of you.Mig

Avrielle

Thankyou very much for all your welcomes and replies. It does mean a lot to me.

I am normally taking dihydrocodiene as a painkiller for my foot pain along with neuropathic drugs such as gabapentin which I am currently on the highest dose with. The Dihydrocodiene was increased by my GP when I saw him on Monday. From 30mg 3 times a day to 60mg slow-release tablets twice a day. Apart from making me more tired, I'm not feeling much additional pain relief to be honest.

I already see Pain Management for my foot, and my next appointment is next month, so perhaps they will be able to have a look at my knees as well when I attend. But I'm not sure if Pain Management can do anything at this stage before seeing a rheumatologist properly.

Guess I'll just have to find out.

I guess it isn't going to be quite as alien to me as it would be for some others, as I have already had to come to terms with a disability, but arthritis just sounds so final. I just hope that my fears can be dismissed easily once I have a diagnosis/seen rheumatologist.

dreamdaisy

As I said, everyone's arthritis is different. I am in my sixteenth year of it and yes, things are deteriorating so I will do what I need to help me because that is something I can do and I am lucky enough to live in an age where the gadgets and gizmos are easily available. If our eyesight goes we get glasses or contact lenses, if hearing dwindles then an aid is employed - using sticks, a rollator or a wheelchair is really no different to those things. You may feel that at 24 you are too young (and of course you are) but you are by no means our youngest member. Arthritis does not respect age, it never has and never will but the general perception is that it is an old person's problem. I took a new step today, I have been given splints fro my wrists. Do I like 'em? No. Do they help? Well, the early indications are yes and that has to be a good thing.

This is a difficult time and no-one has any answers for you as yet but things are moving and that is good. Right, I think it's time for an ice-cream! DD

Avrielle

I'm just kind of sick of being told things are wrong with me. Thank goodness my head is strong enough these days with the aid of tablets to prevent me from slipping in to a spiriling depression!

Currently, I'm on the sofa with my leg up and I want to make a cup of tea, but I can't get up off the sofa! So I guess I'll just have to be here for a bit longer until I can manage to muster up the courage to stand up.

tillytop

Hello Avrielle,

Just wanted to say "hello" and welcome to the forum from me too.

I am so sorry things are so difficult for you but you are in the right place for friendly support and advice so hopefully you won't feel so alone with it all.

As has already been said inflammatory arthritis can be tricky to diagnose - and, contrary to what many GPs seem to think, it can't be ruled in or out based on blood tests alone which is why it is really good that your GP has referred you to a rheumatologist.

Really hope you can be seen quickly Avrielle so that you can get the help you need.

Thinking of you.

Tillyxxx