The podiatry appointment

Mat48

I had my second podiatry appointment at the hospital today. This man is a complete star When I saw him a month ago it was as a private patient down in Edinburgh because I had asked my GP for a referral for physio and podiatry and he refused saying that as my RA was currently un-medicated it might do more harm than good. I was a bit baffled by this so made an appointment anyway with someone friends where I live had recommended highly. I didn't even know he comes up here once a month and holds an NHS clinic.

I arrived thinking he would just say my feet were fine and it was all in my head. Instead he looked me in the eye and told me my feet were very inflamed, it could only be RA and that I needed drugs to get the inflammation under control so he could assess my feet and to prevent damaged occurring while my rheumy decides what drugs to try me on next. He also explained that in his experience (and he's been a rheumy podiatrist for about 30 years) I was very unwell in a state of flare.

So today, as an NHS patient in my local hospital, he said I looked like a different person. I told him that I'd spent a month on Prednisolone at his suggestion and he had helped me greatly by snapping me out of my two year state of denial. He examined my feet and declared them not nearly as inflamed - although there's still a little bit in my toe joints and my achilles tendons. He said that he had realised straight away that I was in flare because of my gait and my crossed arms clutching my shoulders in a flu-like way even though he had never met me before. He feels that kind of systemic unwellness is a big part of RA and that, as it progresses, the extreme pain in a few joints often departs to be replaced by this more systemic stuff. This may sound silly but it hadn't occurred to me that RA would change the way it manifests itself so much?

He also advised me about what to focus on when I see my rheumy in a few weeks time. I told him about my numb-ish legs and feet and the wet, crawling sensation I've had for four months now. He said if he were me he wouldn't labour this too much with my consultant because it dossn't appear to neuropathic as much as neurological and obviously wasn't affecting my central nervous system presently. So in his view my rheumy wouldn't be too fussed about this subcutaneous, connective tissue symptom compared to the business of saving my joints from irreparable damage. And he pointed out that just because Prednisolone hadn't touched it this didn't mean that it wasn't RA inflaming my nerves because nerves take a lot longer to repair than synovial swelling.

He said I should mention my dry eyes and also that my toes keep going bright white at the ends. I asked if he thought this was Raynauds but he gave it another name and that it may well relate to the sensory issues in my legs and was part of the connective tissue stuff that RA brought with it probably. I can't remember what name he gave it though?

He also took my new-ish and very expensive leather walking shoes, having asked me how they feel, and ripped out the leather insoles which he declared to have lost all their cushioning. He replaced them with ones which he customised using a kind of rubber stuff. They felt instantly amazing and I floated out of this consultation only half hearing instructions for me to return and see him again in a month.

Oh yes - and he gave me finger exercises to do to build the muscles in my hands up to try and stop the drift - so podiatry AND hands too - see what I mean by a star?!

So I may not have a rheumy nurse to speak to where I live, and I may still not have had a letter about the GP's CBT referral - but I do at least now have a podiatrist who is worth his weight in gold. I feel so lucky - if I could bottle him and pass him around to anyone here who has bad feet I would!

mig

Right Matt I'm first in the queue,so glad your feet are a bit better. Mig

suzygirl

That sounds like a fantastic appointment and it is nice to hear something going well for you. Things have been so tough and I hope the insoles help, walking when your feet hurt is horrible.

I wish you well for your rheumy appt.

Mat48

Thanks to both of you, Mij and Suzygirl. I am so chuffed today because my shoes cost a fortune a few months ago and I was so disappointed at the way they made my feet hurt even more than usual - as they are flat soled and leather, perfect fit and had cushioning. And they now feel as wonderful as they look!

I'd just added to my post that he gave me some really interesting finger exercises to do as well - how good is this for a foot man?! Mat xx

stickywicket

I'm glad things have taken a turn for the better, Mat. It always helps to have a good relationship with one's medical professionals.

Mat48

Thanks SW. Well he was also the person who suggested my plan to taper off Prednisolone by this weekend might be over optimistic. I emailed my GP to ask for something written down re time frame but it turns out that he is now on a third week off (holiday) and the other two GPs are off as well so I'm waiting for a locum to phone me and give me a proper tapering time frame now. I'm down to one 5mg pill now and on day three of this lower dose (from 10mg) feel very dizzy and exhausted - the room seems to spin intermittently. So am waiting for some very young and hopefully focused locum to phone me back and tell me if I'm doing the right thing in my tapering regime and when I can stop them altogether. So grateful for the podiatrist for having the wit to point out I need a written time frame so I don't end up doing cold turkey by tapering too fast.

Also I was never given a steroid alert card by anyone - should I have in case I spin to the ground and end up in hospital?

barbara12

Mat what a good appointment that was and such a lovely podiatrist..if only all appointment were like this..the insoles must have been bliss after the others.. :DI do wish you well with it all ..xx

dreamdaisy

It took me a year to come off pred but I had been taking it for three years, mostly between 5 and 10 mgs per day. I decreased by no more than one mg evey three weeks, this gave my body the chance to 're-learn' how to make its own version of pred. Chunked decreasing is very stressful on the body, no matter how short a time one has been taking it.

I am glad he has helped your feet to feel more comfortable. Don't overdo the walking though, OK? DD

Mat48

It's funny how the smallest things can mean so very much isn't it? For me yesterday this was the wonderful feeling of being believed and having visual clues (as in him looking at inflammation and explaining it to me so I know it's real), kindness and honesty - and a new pair of taylor made-insoles!

I'm actually suffering from quite bad giddiness today and last night and had assumed this was the result of weaning off the Pred. But a young newly qualified GP just phoned and said that this didn't sound like a Pred side effect at all to her and she thought it must be some kind of viral labyrinthitis or something affecting my balance/ inner ear. I can't even bring myself to mention this to my husband because I seem to acquire more problems so regularly that he'll think I'm inventing them for my own amusement :roll: :oops:

Podiatrist said walking is fine but only with good footwear on soft surfaces (i.e grass and carpets - or mud up here currently?) and not to walk much on them at all when inflammed/ flaring.

Anyway she agreed to try and hasten my taper in that I'm to be assessed for anti-tnfs two weeks today. So she's giving me 1mg tablets to replace the 5mgs now and I'm to have 3 days from tomorrow at 3mg and then down to 1mg for another three days and come off. But phone if this causes worrying withdrawal side effects (current dizzy spells aside!). Heck my poor rheumy isn't going to know what's hit him when I walk through his door two weeks today!

daffy2

So glad to hear that you've had some better results from the medics Mat. It does show that sometimes skill and empathy are perhaps more use than cutting edge medicine and drugs.
I have to say though that your GP really does not sound to be much use to you - is it possible to change to someone else? It seems to me that his(her?) obstructiveness is not just making things hard for you, it is directly affecting your health.

Mat48

Thanks Daffy. I used to feel I had the best GPs in the world - but as I learn more about my health conditions and get to know them well as individuals (my age and social circle overlap with both) I feel a lot more cynical about them I'm afraid.

The man was the one who diagnosed and referred me to the rheumy straight away because of my blood results and symptoms so he was good for me then. Now he just either patronises me or gets defensive - neither of which are much use to me. And he's away a lot too as he sits on our area health board.

And the woman GP is rather wonderful but she only works three days a week and it's like talking to a rather cavalier version of myself - we both laugh darkly and chat about our children and husbands and she is good at sympathising and empathising but sometimes far too much.

She hates Methotrexate and never fails to say this to me and it's been very unhelpful actually because I might well have to go back on it and her dislike of it is very subjective. So I feel rather as a person who has split up with their partner might feel when her friend says "oh I never liked him at all! You are well shot of the man!" and then it's very awkward if you get back together with said ex? Whereas at least the man knows what a DAS is (just) and is uber professional about my health and the drugs I have been taking.

I wish I just had the podiatrist for all of it though - he could be my GP, my shrink (I've been referred to one for CBT assessment), my podiatrist and my physio and rheumy nurse all rolled into one - now that would be grand and somehow I trust him more than anyone else! But criticising my GPs is futile because apart from the young locums there's no choice - I'm stuck with them and they with me too!

My rheumy seems good but is not accessible for advice for the most part unless I go via my GP :roll: atlhough I did phone Aberdeen and was put through to him after speaking to his secretary briefly but I wouldn't risk annoying him by doing this regularly! Mat

stickywicket

Mat48 wrote:

Anyway she agreed to try and hasten my taper in that I'm to be assessed for anti-tnfs two weeks today. So she's giving me 1mg tablets to replace the 5mgs now and I'm to have 3 days from tomorrow at 3mg and then down to 1mg for another three days and come off.

I do understand your haste, Mat, but this would never have worked for me. It was always the last 5-6mgs that was my sticking point. Do you have to be off the pred before being assessed for anti-tnfs? If not, I'd taper much more slowly.

Mat48

Well my rheumy did ask me to try to be off them if possible by this time SW. The GP said the same thing as you are - that its usually the last 5mgs that are the hardest to wean off. But you were maybe weaning off after a longer period as was DD?

I've only taken it for a month (this coming Saturday) so I'm hoping it won't be as hard for me? I'm not worried about return of pain/ flaring but I'm concerned about whether my adrenals will kick back in fast enough and a bit about return of depression/ flu-like ache and fatigue I admit. But if I have to see him while on 5mgs Pred then so be it as you say .

Its just that I've had this situation before when Kenalog stayed in my system masking my RA symptoms and it delayed diagnosis and treatment by six months. I show little by way of swelling usually anyhow so my high blood markers are very important. And he did explain that it makes his job much harder in making the case for the more expensive drugs to my Heath authority if my DAS is a bit too low. And feet don't count either so my hands and blood need to represent me if at all possible. But I'm not risking adrenal failure for this don't worry! I'm sticking rigidly to the instructions on my new Pred packet and if I just can't hack it I'll have go back up again :roll: x

daffy2

It does sound as if you are between a rock and a hard place with your GPs Mat, which is not a comfortable place to be at the best of times but especially not when you need their help. I do hope they can start being a bit more professional in their dealings with you - personal prejudice, and willfully ignoring aspects of your medical profile, really are not acceptable. I wonder if your male GP is one of those who would prefer that patients just accept what they are told, instead of trying to engage in constructive discussion of facts and options. Years ago when I was involved in PCTs etc I remember hearing about the Expert Patient initiative that was being brought out and asking if GPs were ready and willing to deal with said patients. Publicly I was told yes but outside of meetings was told no, that many GPs would react to such an approach unfavourably.

Boomer13

Hi Mat;

Your relief in finally being treated properly and listened too is so evident in your post! I really feel for you and wish your GP could get his ego out of the way and deal with your case in a more positive manner. I sure understand the difficulties of having to deal with the medical professionals that are available because I live in a very small community too.

I moved on from my old doctor because he stopped listening to me and I now have the very uncomfortable experience of bumping into him regularly in town :oops: . Moving on was still worth it.

Glad to hear you were so well treated.
xxAnna

Mat48

Thanks Anna. I've had a bit of a dip for these past few days as I taper off the Pred and also stop taking Zopiclone and Amitriptyline. This is meaning extra insomnia on top of slowing down a bit and increase in pain levels but I'm taking co-cos to address the pain at least. Yes I have very mixed feelings about my GPs these days.

I attended an AC self management workshop last week and, while it didn't offer much that I hadn't already established for myself - it was an insight into how many people have these issues with their GPs and not feeling listened to.

To be fair it must be hard for them seeing patients with chronic conditions week after week - and having to defer to their consultants where share care and drugs are concerned. At least my podiatrist doesn't have to prescribe the drugs he's so admiring of. I'm starting to realise that we just have to view it like portraiture - each medical professional sees an aspect of us that is a unique interpretation and some are better and more insightful than others but all are valid in one way or another.

Re encounters with gps in small places - I bumped into my GP in a remote car park next to a beach the other week. He jumped out of his old landrover as I was heading for the dog poo bin and told me that he wasn't using his binoculars to spy on me but was looking for interesting wild life on the horizon! I hadn't noticed he was there let alone with binoculars! He was all sweaty from a jog with his dogs and we stood and chatted about the latter and the merits of dog walking. I felt very cheered at this encounter and I think it was because of his initial discomfort at being in the back foot! It felt like a level playing field between us for once!! :roll:

Teapot

Hello Mat I read with great interest your posts. I too am suffering with my feet and knee. Worst flare up. I had insoles made 2 years ago but they are quite hard. I am due a gp appointment on 21st and am going to ask to go back to foot people for another pair to be made. What are yours made of as you say they feel soft and maybe that would help my heel pain. Thanks

Mat48

Sorry you are in pain too Valde. My insoles are not the permanent ones I was expecting. I think he must have forgotten to bring these with him but these are made of a type of foam and are called "1st Phase - orthotics". He stuck some kind of vinyl padding to the bottom of them to give extra cushioning for my toe pads as well.

I tried them with a different pair of shoes today. But because my feet are also slightly numb and frozen when I'm out - I have been wearing thermal socks and this makes all my shoes feel very tight. So as a consequence my feet are still very sore just now. Its not my heels though but my metatarsals. My Achilles' tendons are swollen and stiff too. He did say that my FitFlops are good for supporting the heel - which is very important. Have you tried this brand of footwear?

Also maybe of interest - a nurse friend swears that yoga is the answer to sorting out feet by realigning the body frame so that there's less strain on them. Mat x