arthritis

[suzannah16]

I think I know why my rheumy is so dismissive of my arthritis, I have the wrong type. Apparently it is rheumatoid arthritis that goes with autoimmune issues and I have osteoarthritis. I am just "wear and tear" despite being ill for most of my life and probably having used my joints less than other healthy people. The arthritis also probably started when I was around 40 and that hardly seems old enough for "wear and tear". I'm wondering if I should ask to change rheumy.

[Melba1]

Is he dismissive with other symptoms too? I think we have enough to cope with without any symptoms being dismissed, they need to be validated and helped with, so yes, I’d change if you’re not in that type of relationship.

I ask myself now with new clinicians (and they’re nothing like as important as that medical relationship with rheumys for us as they’re in overall charge) if I trust them, respect them and feel safe with them. Do you feel that with your rheumy? Do you leave an appointment with him feeling better or worse? They don’t have to know everything or understand lupus fully but they do have to be kind, honest about their limitations and certainly not dismissive.

I just have to see my rheumy when I’m feeling really ill or even hear his voice on the phone and I’m filled with such reassurance and a feeling of safety that he’s going to sort it out - whatever it is and even when he’s honest he doesn’t really have the answers at that stage, it’s knowing they’ll try and sort it out. I would love everyone here to have that feeling of safety but many rheumys seem to not give that. Even if yours isn’t the ‘right’ sort of arthritis (and you’re right from 40 seems very young for wear and tear) it’s still his role to help you, listen and validate your symptoms.

I told a registrar in hospital recently that she needed to learn to listen to patients (she was dismissing the whole rheumy wards symptoms if not on her checklist 🙄) but her lack of listening to what mattered to each of us meant none of us trusted her, respected her or eventually took any notice of her!!! We all fought over who would hide in the bathroom until she’d done her rounds 😂 I’m sure some of it is just lack of social skills? If your rheumy said ‘I’m sorry you’ve got this, it must be very painful but unfortunately there’s not much we can do for this type’ etc but we can try x or y that takes a few minutes but is much better than feeling he just isn’t listening or doesn’t care?

X

[suzannah16 in reply to Melba1]

It's a she and I feel that if she can't help with something she doesn't even bother to test just in case it may be something else that is causing the problem. I recently gave her a list of everything I could think of and she seemed pleased because she could diagnose it as fibromyalgia but fibro doesn't cover everything on my list so she just ignored those. I asked if I maybe had spondylitis as I know it has a connection with my colitis and my father has spondylitis. She dismissed that but did agree to do an x-ray. When I checked with my GP he had told her he thought physio would be helpful but her letter to me said take paracetamol. I don't know whether the x-ray showed anything so I have had to make yet another GP appointment because rheumy hasn't told me. I also had an ultrasound on my feet [I thought this odd] and the radiologist said he would tell her I should have had electrode tests. I am guessing she is ignoring this too as her letter didn't mention it either. Reading what I have just written if anyone else had put this I would tell them to change rheumy. Thanks I now have this clearer in my mind.

[Barnclown in reply to suzannah16]

👏👏👏👏Go for it suzannah‼️. This rheumy really sounds like she is not interested in paying attention to you as an individual patient with your own version of immune dysfunction & connective tissue disorder...here we ALL know this isn’t just about ticking boxes...and that the really decent , more ‘expert’ rheumies are those whose eyes light up with interest in appts, those who behave like 🕵🏻‍♀️🕵🏼‍♂️True Detectives, not like 😑PC Plods 🙄......GRRRRRR 😾

🍀❤️🍀❤️ Coco

PS 😍 THANKS for ANOTHER 🌟🌟🌟🌟 photo

[Hidden in reply to Barnclown]

It’s hard in our area Coco because there’s such a desperate shortage of rheumies now that the existing ones are extremely overworked and don’t really have time to be good detectives - sad as this is for people like Suzannah and I. Once they decide you have Fibro or FND or whatever the going functional thing is - we are doomed to no more detective work! Xx

[Barnclown in reply to Hidden]

Yes, i know it’s especially hard for you guys there...in wales too...but you guys are very determined & clever...you stick to your guns and hunker down, constantly seeking out the best care you can force from creaky deficient health systems. I think you guys are great 🌟🌟🌟🌟role models for us all!

👏👏👏👏❤️🍀❤️🍀

[suzannah16 in reply to Hidden]

Who do you see TT? I have female Dr B...

[Hidden in reply to suzannah16]

I just messaged you to confirm but yes I too have female Dr B! Xx

[suzannah16 in reply to Hidden]

I shall have to tell her we have been discussing symptoms. Do you think she will smile or grimace?

[Hidden in reply to suzannah16]

Defintely grimace. Say we have all been discussing our rheumatolgists and she might be more interested lol! X

[Melba1 in reply to suzannah16]

Oh yes definitely. Especially if other drs are recommending tests/ treatments and she’s ignoring them as well as ignoring anything she can’t answer easily from you. Are there any good ones by reputation in the same hospital? Any lupus centres of excellence near you? Sometimes we only get the clear answers (and sometimes not as so much isn’t clear cut with this disease) when we find someone with either great knowledge or the tenacity and listening skills to work with us to get there.

X

[suzannah16 in reply to Melba1]

I don't know about other rheumys, the first one was so bad I changed him after one appointment. I don't know of any lupus centres in Scotland.

[Melba1 in reply to suzannah16]

You could try a post asking for recommemdations for one hear you? Paul will normally know or other patients recommending someone usually means they’ll be good (although we all have individual preferences, not many would recommend one like yours 😬)

Really hope you find a nice supportive one x

[Hidden in reply to suzannah16]

There aren’t any centres of excellence for any rheumatic diseases here in Scotland. We are rapidly finding ourselves in the same situation as people in Wales. No out of area referrals either.

[eekt]

I met with the medical boss at the local general the other day - he's the one who has to deal with complaints about consultants. He became impassioned* talking about the human impact of long-term illness, that doctors have to relate to their patients otherwise they're failing in their work, that a small dose of empathy is better than a big box of pills, that good doctors take an interest in learning ! 🌟🌟🌟🌟🌟 Pretty much summing up what Melba1 and Coco have said!

Hopefully you'll find a Rheumy who cares about their work...go for it, ditch the witch! xxx

* he's a psychiatrist to trade, with neurological training and author of a paper on a SLE manifestation ! 🤗

[Barnclown in reply to eekt]

🤩 THANKS for giving us all hope‼️ means A LOT to know medical bosses like him are out there trying to improve medic/patient relationships 👍👍👍👍🍀❤️

[eekt in reply to Barnclown]

🤗🤗🤗🤗 XOX

[Hidden in reply to eekt]

I don’t want to appear cynical Eekt - but he’s not the lead prof of neurology at the Western General, Edinburgh is he? I ask because I know about this chap talks the talk but doesn’t walk the walk so to speak.

I ask because he has a neuro/ psych background and is personable and plausible (and may seem passionate) to those victims who haven’t a scoobies what they are actually being landed with. Then they hit a brick wall running.

As with politicians, some consultants say stuff but when it comes down to it the science does really matter - not just excluding the big neuro critters such as MND, brain tumours, MS, PD etc- but being able to put symptoms in a much broader context of rheumatic and other diseases.

Some doctors can appear charming, compelling and very empathic while diagnosing something like FND - which has then left many people absolutely stranded with neither a psych diagnosis not a biomedical one.

I’d prefer a doctor with an abrupt manner who got it right than one with buckets of charm and empathy who has got it wrong. X

[eekt in reply to Hidden]

I saw him in an 'advisory' capacity rather than as a patient...in his new role, he's no longer a clinician...he's planning an information day for consultants along the lines of 'technical skills make a good doctor, patient empathy makes a brilliant one', plus the human cost of Big Miss Diagnoses such a conversion disorder, hypochondria, Munchhausen's etc...🤗 🤗 xxx

[Hidden in reply to eekt]

That’s very reassuring to know thanks Eekt 🤗😎xx

[Hidden]

Hi S. I’m not sure whether we share a rheumy or not - given our location and the fact that mine works around the place including near you?

I think mine is quite efficient and my GPs and optician think highly of her. But for me she speaks fast and tests seem to focus on what I don’t have wrong rather than I do. And she seems to displace on these tests rather than focusing on how I’m actually feeling. Also her letters to me reporting test results show that she doesn’t know how informed I am about my disease as they explain things as if I’m totally dumb ie she’s patronising!

Re wear and tear arthritis - that’s a tricky because, as I understand it, with diseases such as Lupus and Sjögren’s, we are prone to secondary osteoarthritis which may affect us more severely than the general population so inflammatory arthritis and osteoarthritis can run together - they do for me.

Also, similarly to degenerative disc disease, some will get osteoarthritis at a young age- unfair as this seems. It’s not always age related wear and tear basically.

Lastly - for some osteoarthritis is inflammatory - closely linked to spondyloarthritis such as PsA and AS.

I think your rheum should be considering this bearing your age in mind. Perhaps this is why she wanted an MRI of your feet to check for specific signs of erosion. Maybe you could discuss this with a favourite GP and ask them to write to your rheum about this or phone her secretary? If we do share a rheum then I found that mine responds to me phoning her secretary with a letter. If I’m not happy with what she’s written I email her or leave a message and she phones - well at least she did this last time.

But again even when she phoned the one time she asked things like “and who put you on 3g of Mycophenolate? This seems a very high dose!” - my reply: “you did!”. I’ve only seen her twice but I don’t think we have a lot of choice.

The best one i know of is the one Gloomy Eeyore sees but she’s like gold dust - over burdened clinic lists - and (according to local LUK group president) they are training up a specialist nurse to take over some rheum patients cases because of the desperate shortage in Scotland - starting of course with Sjögren’s🤷🏼‍♀️🙄xx

[Barnclown in reply to Hidden]

😯 WOW TT: Am VVVV greatful for this Masterclass on the subject...i especially NEED this right now cause am in the process of getting views from the neurosurgeon (see him early feb) and rheumatology re the progression of my early onset complex lower spine conditions which include AID/osteoarthritis inflammatory process. Looks like i need a foraminotomy + laminectomy + who knows what...and what concerns me more than the surgery, is figuring out which analgesics i can tolerate, because although my lupus meds (myco + pred especially) are ALREADY helping with pain relief, i need more during acute flares but have become hyperreactive to prescrip NSAIDs and need to be ULTRA cautious about staying on the anti-epileptics & opiates etc my medics had been prescribing ....if i take these for more than a very few days my Intestinal Failure thing goes into bowel obstruction...🤷🏼‍♀️😾GRRRRR: are our lives ever SIMPLES⁉️ ❤️🍀❤️🍀❤️

[suzannah16 in reply to Hidden]

No MRI just an ultra sound

[Hidden in reply to suzannah16]

Oh okay - I guess this can detect inflammation well so this is what she was looking for? X

[suzannah16 in reply to Hidden]

I have no idea what she thought it would show, I gave her a list of the different pains in my feet, when I repeated the list for radiologist he said US was of no use for the type of pains I was getting.

[Fennella02]

When we were having Sky fitted to the house a couple of months ago, I was chatting to the engineer and somehow we realised that we both had AI conditions. He goes to Bath (another casualty of one of our local rheumatologists with zero patient skills) and he has been diagnosed with sero neg non-radiographic spondylarthritis based on symptoms and family history. He gets lots of support from the hospital and they have worked out a mutually agreed plan. From what he said, your symptoms sound similar.

My rheumy is warm, friendly, dynamic - in the appointment - but that’s where it ends. I leave each one with high hopes but I’ve kearnt that if he doesn’t do the relevant forms actually in the appt then nothing happens. Xx

[suzannah16 in reply to Fennella02]

mine's the same. she speaks fast and by the time my brain is caught up i'm halfway home and realise nothing has changed.

[Fennella02 in reply to suzannah16]

Just seen that my reply contains several unintended trademarks - not sure how that happened. Computer illiteracy. . . Or perhaps it’s my phone coz I’ve seen something similar in Twitchys reply. Whatever . .

[chrisj]

I've been seeing rheumatologists since 2005, referred following a positive test for mild Lupus. The first rheumy I saw was a woman, a professor who was very professional but also very sympathetic, when I told her about other problems I'd been having she was onto it immediately. The bloods came back showing low vit D and treatment started almost straight away. Sadly she retired not long after my first few visits and the next doc I saw was male, ok but it was very much a "hello how are you" interview with me saying "ok thanks" and not a lot else. It became a ritual for me just getting blood and urine tests done and packed off home. Last year said rheumy got in touch to let out-patients know that he was moving into the managerial side and another doctor would be taking over.

Went for my first app with the new one and found him brusque with a very quick session and I left feeling downhearted, my son was with me. The next time was different, a much more relaxed man who was interested in how things were. He sent me off for knee x rays that I felt had been a long time coming. There is no doubt in my mind that some doctors are not aware how anxious we get, they are so blinkered. My son suggested in the first app the doctor was unsettled and tense and when I thought back he was right. By the next app he was much more relaxed and interested and it reminded me that doctors are human too, they're not perfect. The x rays had shown one knee cap was out of alignment, didnt find that out till I saw a physio months later, and there was some cartilage damage, some OA in the right knee as well but not as much. I've had exercise sessions to help strengthen muscles round my knees that lasted 6 weeks, local sports and health centre. Supposed to do them at home and I did for a while but it wore off and I keep forgetting. I use one exercise for my left knee if its sore and it does help.

I've stopped going for walks as the pain was getting steadily worse until I got up one morning in april last year and couldnt put my weight on it. Had to send for a gp who dropped a prescript off for paracetamol and tramadol. Still not had it x rayed again, it took weeks to settle down, still concerned about what state its in. The physio assured me it wasnt that bad but I know another x ray would put my mind at rest. Its certainly not getting better, the pains eased a lot but I know its not right.

Also diagnosed must be 18+ years ago with osteoarthritis after x rays showed a displaced vertebrae mid spine, think I did that in the 1960s lugging an obese patient around in her bed trying to get her to sit up and she would not co-operate. I felt the "ping" in my back but no pain so never bothered to get it checked out. The gp 18 yrs ago told me I had wide spread OA which surprised me as apart from mild back ache and getting tired easily, feeling the fatigue mainly in my back and discomfort in both feet I dont recall any real pain. It increased as time went on until last year when my knee gave way and I suffer from chronic back pain now.

I became stationary, hardly ever going out that started when sciatica struck, some of the worst pain I've ever known. Spend my time very much in the house these days, weighing 12 st 4 lbs, 5' 5" tall so slightly obese and hating it....

[suzannah16 in reply to chrisj]

I feel sometimes I would just like to sit and not walk again, my feet can be so sore, but then sitting can be just as painful in my back and hips. I force myself to at least try and walk each day [weather permitting] sometimes I can do a couple of miles other days I get nowhere near that, I find that walking can clear some of my lupus brain fog and my tinnitus is less noticeable too. It's hard to lose weight when exercise is painful or the fatigue too great. I managed to lose 5lb in the last 3 months, still got at least 1st to go.

[chrisj in reply to suzannah16]

Sounds like you're doing ok in spite of the problems Getting out is good for tinnitus as well, I've found that myself. I'm active in the house but not as much as I used to be and fearful of walking far. It is what it is and accepting things has been half the battle for me. Wish you well Suzannah xxx

[Cas70]

I had the same response as did my friend. I am 72, she is 42 ! Wear and tear at 42 ?? I can’t seem to get any one who really is on the ball with Lupus and Sjogrens. I can just about cope but my 42 year old friend gets very very low. Good luck.

[suzannah16 in reply to Cas70]

thank you