Confusing Symptoms, Isolation and No Way Forward

rayray

Hi there,

I was on this board some time ago following a THR. I have a long, complex history of various joint issues and weird stuff going on in and around some joints. I have seen several surgeons and had six surgeries in the last few years plus countless steroids. The words 'I've never seen this before' seem to be regular ones but frustrating as I wish that an underlying problem could be found rather than the random problems that get treated separately. I don't have osteoarthritis but a rheumatologist doesn't think it is inflammatory either. I do seem to create loads of calcium, inflammation and scar tissue around my joints.

My THR is amazing, incredible, fabulous - what more can I say? Unfortunately within five months of the THR when I was finally back on feet my inflamed shoulder kicked off big time and the degeneration of a disc in my neck decided to show itself at the same time. Since, it has been a rocky road with good days and bad days. I have had the shoulder operated on but now have a frozen/ inflamed / goodness only knows what shoulder which causes havoc at times. Several other joint problems cause problems from time to time and are better at others.

For me the best thing that could happen is a GP or nurse led consultation on a six monthly basis where they could listen and advise on how to manage what is going. From what I have read it seems almost universal that this doesn't happen. My GP practice just doesn't seem to want to know. I totally understand how busy they are, under resourced and that my condition is not life threatening but it is hard to manage at times and my life can be very restricted when things have flared up.

I am still of working age and work full time in my own business for which I am very fortunate as it allows me great flexibility in how I work depending on if something is hurting.

Does anyone else have similar feelings of isolation and the feeling like the are managing, just but that they are totally off their GP's radar?

Thanks for taking the time to read this.

barbara12

I only realised how complex arthritis was when I joined this forum nearly 4 years ago now, like you say if we could get all the specialist together or at least they could look at your MRIs and xrays and put there heads together.
I saw a rheumy 4 years ago and got nowhere and have just seen another one ...he was very good and came up with spondylitis only to be told when I went back this wasn't the case...so now like you I feel a bit like being in no mans territory..they did come up with with a few things it could be so waiting again..Its awful when you get one joint fixed and then another joins..its the same here ..hope you can get some answers very soon...just keep on at them..I always say you have to shout to make yourself heard...good luck

stickywicket

Hello rayray. I'm sorry I can't help other than to suggest that you can, indeed, have a 6 monthly consultation with your GP - just make an appointment. Mine actually reviews my RA annually and I also get an annual asthma check. If it'll help go for it.

dreamdaisy

I can identify with the confusing symptoms, plus the isolation and feeling that there is no way forward but I reckon it's all to do with the weird-and-not-that-wonderful world of arthritis. There is only so much the professionals can do because they cannot do that much; the rest is up to us. There is no true cure for arthritis but, speaking as an arthritic with a creaky foot in both camps, I know the limitations of my doctors all too well. I am also aware of mine and they continue to steadily decline. DD

rayray

Thanks you so much for your replies. It is so good to feel I am not totally alone with feeling as I do and with the random and confusing symptoms. I would love to hear how you get on going forward. I have a policy now of when I see a Dr I just talk about the particular problem I have that day rather than saying that several things seem to be going on - every time I have I have not had a good reception or it has just been ignored.

I am having a better week this week with just the normal aching rather than the feeling I can't stand for long.

It was funny, after everything I said about GP's in my post I had a call totally out of the blue yesterday evening from a GP I saw last week -
I had a strange week. I try and keep as fit as I can by walking and swimming. Last Sunday week I woke a bit achy which is normal and set off on a walk. Within a hundred yards the pain at the bottom of my back/pelvis was really nasty. I continued for hubby's sake but just wanted to sit down. When we arrived home I did just sit and the pain eased a bit. The pain lasted all last week but has now gone again.

On Monday my ear dramatically swelled up around the cartilage rather than in the ear canal. Glands came up and it looked pretty nasty. I saw a GP on Thursday and he was a bit mystified as I have no injury or bite there. He has given me topical steroids and antibiotic. Some of the inflammation has gone down and the glands are better but it still looks pretty angry. This is why the GP rang - to see how it is. I nearly cried that someone actually cared! In my sad, pathetic way I hope that this may be the inflammatory problem revealing itself properly at long last although I am concerned about the consequences. Anyway we shall see whether it is a random infection or inflammatory. Pity about the GP - I think he is a locum.

I hope you don't mind me chattering away. It helps a lot to write things down.

Thanks again!

Boomer13

Hi and sorry to hear you are suffering. Confusing symptoms are the norm for me :roll: with PsA.

I just wanted to mention that there are rheumatic illnesses that feature intermittent swelling of cartilage, as in your ear pinna. I'm not sure if you consult regularly with a rheumatologist, but I would definitely keep notes on what has happened with your ear and mention it to your rheum next time.

Take care.

barbara12

Aww we don't mind you chattering away one bit,this is what gets us through most days and talking is a good release hope they find out what is wrong with your ear...it does sound painful...has for the other yes just the one thing when you go to your GP, but try and be assertive it took me a couple of years but it came, and now I ask for MRIs and xrays..and to see consultants... .let us know how you get on

stickywicket

Just a thought - when you swim you don't do breast stroke do you? The leg stuff is a no-no for arthritic hips and THRs. Use the crawl kick instead.