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 Post subject: Say hello
 Post Posted: 10 Jul 2018 10:38 
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Joined: 10 Jul 2018 09:14
Posts: 2
Hi Everyone
I was diagnosed with RA four years ago, it was a battle to get a diagnosis & i was relived. I had symptoms when I was 30, I am now 50. Since the initial diagnosis I have been told i also have OA in my knees and ankles. I now take Methotrexate 20mg & Amitriptyline 20mg at night, prescribed by my consultant Rheumatologist. I also take Diclofenac & dehyrdrocodeine but these are prescribed by my neurosurgeon.I am an ex nurse & have had 3 back surgeries,so also have chronic back pain. I had to leave nursing due to this.
I am here today as I wanted to ask if anyone has had issues with their consultant ? & if so what have they done about it. My issue is that she a!ways upsets me, I dread seeing her, she doesn't listen to me. She always without fail tells me to go to do aqua aerobics ! am I doing my Achilles stretches? When i say I struggle almost everyday to get up & go to work, because of the stiffness & pain & I have to wait over an hour before I can get down the stairs, she then says that's 'wear & year's nothing to do with Inflammation, she can't give me anymore drugs. I know all that but she just thinks I should get on with it. No offer of any other help or support. Yesterday I saw her & she said it's the menopause causing tiredness & fatigue, & my joint pains. I feel demoralised, I cried for the rest of the day & today I feel like I have no future. I struggle to work, clean & shop, I can't do gardening any more as I can't get up from the floor. I used to be able to walk my dog twice a day but lately my feet are so painful I can't do that.
I have a thyroid problem too & anxiety / depression. My consultant is Rheumatologist. I would be interested to know if anyone else has this issue & if so how they deal with it. I do always take my daughter with me to the appointments & she says that the consultant treats me badly. Can anyone suggest a way forward ?


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 Post subject: Re: Say hello
 Post Posted: 10 Jul 2018 11:44 
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Joined: 01 Jan 1970 01:00
Posts: 19400
Hello Bolly and welcome to the forums from the moderation team.

I am very sorry to hear about your diagnoses you do seem to have such a lot going on; with thyroid issues, back problems as well as Osteoarthritis and Rheumatoid Arthritis. You have really found a lovely community here and I know our members will give you as much support as they can.

You do right to take your daughter with you to your appointments we often advise that. People do have problems with their Drs, (GPs too), but it cannot be good to come back from an appointment feeling demoralised and tearful. I have to say with all you’ve got on you do well to be working at all and deserve a huge pat on the back.

I popped ‘unhelpful doctor’ into the search (top of page underneath ‘about us’) and got lots of previous threads. It might make you feel a bit better if you read some of those.


Having said that sometimes a Dr is just not ‘right’ for you and in those circumstances you should be able to ask to change consultant. I am attaching a link to PALs who will be able to advise you of the process:

https://www.nhs.uk/common-health-questi ... n-service/

I wish you all the best and please do let us know how you get on

Ellen


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 Post subject: Re: Say hello
 Post Posted: 10 Jul 2018 14:01 
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Joined: 21 Oct 2010 16:03
Posts: 24041
Well, what a pickle you're in! RA is bad enough. RA plus OA? Yes, I and several others on here have 'done the double'. Depression is often an understandable 'add-on' with our problems. But you also seem to have neurological problems too and it sounds as if you're going through the menopause even if that's not a factor in your pain levels. Poor you!

I've been very fortunate in always having good / great/ very nice rheumatologists. I've seen two retire and moved about 150 miles myself but I've always fallen lucky. I do recall one very horrible experience though when my boys were young and I virtually crawled in to my appointment only to be told, brightly, “Well, according to our blood tests you're doing well.” I told him what I thought of his blood tests and he did x-rays of my knees. That was when I learned I also had advanced OA and I got new knees about 3 years later.

My point is that, sometimes, the rheumatologists really can't do any more. Their job is to control the disease and, if the disease is under control., the rest is to do with OA (not the rheumatologist's preserve) and pain relief. Or, possibly in your case, the neuro problem too.

I think you're doing amazingly well if you're managing to continue working but there does come a time, for all of us, when we have to reconsider as you must have done when you gave up nursing. It's difficult in many ways but our first priority has to be our health.

Your rheumatologist does have a point about the aqua aerobics and Achilles stretches. Exercise is so important in keeping many of us mobile. I have always found that when I least feel like it is when I benefit most. But sometimes other things get in the way. For me, literally, right now as a fold-up bed, briefly in use, is taking up the space where my exercise machine operates. I shall have to resume slowly and gently with those particular exercises next week.

As for the 'wear and tear' being 'nothing to do with inflammation – I'm sure you'll know that 'wear and tear' is another name for OA. It IS to do with inflammation but only localised ie in a particular joint. The methotrexate is to deal with inflammation throughout the body caused by RA. Localised OA inflammation is really the GP's preserve.

Have you ever been referred to an orthotist for your painful feet? I have to wear surgical shoes but just orthotic insoles can make a big difference. So – used in short bursts – can ankle supports. My rheumatologist first referred me but it's possible a GP can.

Please don't feel you have no future. I'm sure you do though it might have to be different from the one you'd envisaged or planned. My maxim is that the more inflexible the joints, the more flexible the mind must be. We have to keep changing what we do and how we do it. Or, sometimes, let go of some things in order to hang on to the more precious ones.

If you feel you'd be better with a different rheumatologist I'm fairly sure you could change. Perhaps a word with your GP? Your local PALS might also be able to help. (Ah, I see Mod Ellen is thinking on the same lines.) But we're always here too. We do understand – even though we'd rather we didn't, as it were :wink:

_________________
'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Say hello
 Post Posted: 10 Jul 2018 16:05 
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Joined: 22 Apr 2010 17:15
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Hello, I've done the triple with psoriatic (PsA) plus osteoarthritis and fibromyalgia. I wasn't expecting to be diagnosed with the latter, thinking that my matter-of-fact and plain-speaking rheumatologist would not be a believer in that condition but she was. Some joints have one, some the other and others both. The meds I take for the PsA do nothing for the OA apart from controlling my inflammation, the pain relief I take for the OA I guess kinda help the pain from the PsA and rest is the 'silver bullet' for the fibro. None of these conditions are going to go away, get easier or better and I am always learning new ways to help myself get on better with the challenges.

I managed to work for a number of years before retiring but had the benefit of being self-employed, thus I could tailor things to better suit me. As our conditions worsen (which is the way things go) something has to give so we inflict less harm on ourselves and work is often the first thing to be kicked into touch. It is not an easy decision however, and not a valid option for many.

I have had a number of rheumatologists over the past seventeen years, the first one told me I wasn't in his gang and referred me back to orthopaedics (twerp). The rest have varied in tone and temperament but having a professional work background myself means I have the confidence and brass neck to speak up if I feel the need. They are very well versed in the theory of living with auto-immune arthritis, as are GPs with osteoarthritis, but there's nothing wrong in reminding them from time to time that we real people with real problems, not examples in text books. It is far from from easy, however, to challenge those we might perceive as our 'betters'. I was a teacher and learned more from my pupils than I ever imparted, docs should be willing to do the same. In my long experience of the medical profession (birth onwards, I'm now 59) not many are.

To a certain extent we do have to get on with because cures are not out there, our conditions are degenerative and progressive, can lead to other things such as my fibro or other stuff, which will still rock up because that is life. I take a small daily dose of an anti-depressant, my mood plummeted when the OA was diagnosed back in 2011, both my GP and rheumatologist reason that if I am stronger mentally I can cope better physically. I exercise in some form or another every day to preserve what I have for as long as I can before the next drop in standards and I have to start all over again. Things would be very different if I didn't and not in a good way. I'm in pain 24/7 and exercise can aggravate it but so what? I regard it as a more positive pain but I've had years to twist my thinking, to find the very heavily disguised positive (which I probably invent anyway). :lol: DD


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 Post subject: Re: Say hello
 Post Posted: 11 Jul 2018 00:06 
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Joined: 10 Jul 2018 09:14
Posts: 2
Thanks for your replies
I was feeling very down after yesterdays appointment but I am fine again now, we all have have our bad days. I realise that as far as my rheumatologist concerned my RA is under contro!, I need to see if there is anything my GP can suggest for my OA.
I do walk every day for 30 minutes with my dog & do the exercises the physio gave me but I guess I need to realise that some days I need to adjust this. I do need to look at other forms of exercise though. It's nice to hear from others who understand
I am glad I joined this forum - it's already helped me already
Bolly


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 Post subject: Re: Say hello
 Post Posted: 11 Jul 2018 09:36 
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Joined: 21 Oct 2010 16:03
Posts: 24041
I'm pleased things are a bit better. Sometimes we are so near the edge with a build-up of pain, fatigue etc that one more thing sends us toppling. That's especially so when we have built up our hopes for a consultation and nothing seems to change. But, just as small things can send us over so can small things build us up again.

_________________
'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Say hello
 Post Posted: 11 Jul 2018 12:25 
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Joined: 22 Apr 2010 17:15
Posts: 29302
There is help out there but we have to ask - and not expect too much in terms of the conditions being eased to any noticeable degree. That's the hard thing for us with both kinds to learn, to do and to be content with. Over the years I have heard some astonishingly stupid statements from others about arthritis, my favourites are 'I didn't know you could get OA in other places,' stated by a neighbour whose experience of OA was one hip so she got a new one and lo! she was better :roll: and 'Why don't you go to the doctor?' said by more than one twerp. :x DD


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