Refused Rheumatology Referral.

[Sparklingsunshine]

I can only assume my GP has now received the podiatry report and MRI results of my recent right foot and ankle which shows extensive osteoarthritis in my mid foot. I'm still under podiatry and they will be attempting a guided steroid injection into my foot at some point.

I got a phone call yesterday asking me if I wanted a referal to rheumatology. I declined, because waiting lists are long, unlike RA there aren't many treatments for osteo, just painkillers etc. Or surgery. I've been offered fusion surgery but its major surgery and has a long rehab recovery. I'm not in enough pain to agree to that yet.

And lastly I've dealt with Rheumatology before for my EDS and Fibro and frankly they weren't much cop. Apart from diagnosing what I already knew they offered sweet FA in terms of management. It was very much a case of learning to " live with it".

I'm awash with medical appointments atm and really couldn't face yet another one which will just be a let down. But I'm wondering if I've done the right thing. Anyone ever seen a Rheumy for osteoarthritis and did you benefit?

[SlowDragon Administrator]

Anyone ever seen a Rheumy for osteoarthritis and did you benefit?

I saw/see one privately…..since early this year

X rays show both knees are in need of replacement……

Very knocked knees since child and decades of untreated vitamin D deficiency probably not helped and significant weight gain when hypo

but I opted to go see Rheumatologist first ……partly because I was in middle of moving house and area …..and partly because wondered if addressing inflammation caused by hashimoto’s might be first step

Now on daily prednisolone 5mg …..astonishing improvement and apparently can stay on this indefinitely

Also doing lots of physio exercises to build up muscles in preparation for knee replacement

Might be coincidence but …..

TPO antibodies dropped within range for first time in 30 plus years

TG antibodies dropped to almost within range

Ferritin dropped from over 300 to 150

[Marz in reply to SlowDragon]

I too am struggling with knees ! Awaiting results of x-rays having driven 2 hours for private appointment !

[Sparklingsunshine in reply to SlowDragon]

I've got knock knees due to EDS and flat feet, another EDS symptom. I now have mild knee cap arthritis in both knees and arthritis in feet. I thought they only prescribed Pred for inflammatory conditions like RA and Lupus.

[SlowDragon Administrator in reply to Sparklingsunshine]

Rheumatologist thinks I have mild hyper-mobility as very flexible

Very tall, and …….pre Hashimoto’s……extremely skinny (those were the days!)

Gluten and dairy intolerant and lipodema……all indicators of inflammation

nhs.uk/medicines/prednisolo...

It helps by reducing swelling (inflammation) and can also calm down your immune system. This helps autoimmune conditions, like rheumatoid arthritis, where your immune system mistakenly attacks its own tissues.

[Sparklingsunshine in reply to SlowDragon]

I'm pleased you've found something for the pain. My mum suffered from severe RA and had two knees replaced, very sucessfully too. Mine is definitely OA though as the scans, xrays and blood tests show.

Hypermobility can lead to an increased risk of OA as the joints take more wear and tear due to weak or floppy muscles and tendons. I'm still surprised they prescribed steroids as my understanding was its only effective where the immune system is overactive and attacks the joints.

Still if it helps that's all that matters. I've always felt really good on Prednisolone. More energy, more get up and go and less aches and pains.

[SlowDragon Administrator in reply to Sparklingsunshine]

I have just recently started getting some acid reflux at night …..was thinking that was most likely thyroid…..but just been reading…it’s a common issue when been on prednisolone a while…….so that’s a pain (literally)

[Sparklingsunshine in reply to SlowDragon]

Yes I've had pred before for asthma exacerbation and reflux is definitely a symptom.

[Curious101 in reply to Sparklingsunshine]

Hi there,

I'm on Pred for PolyMyalgia Rheumatica, and I take Turmeric for the reflux - according to an article I read either in the BMJ or Lancet it's as effective as Omeprazole.

[Matilda111 in reply to Curious101]

Congratulation. So wise. I am eating when needed, very rarely, just a piece of cucumber. As I like veg. incl. cucumber I am rather preventing. Successfully.

[Countrykitten in reply to Curious101]

Interesting. I've tried Turmeric but it gives me terrible heartburn!!

[waveylines in reply to SlowDragon]

That's great news!!! Don't know about others but I've become quite skeptical over the years so its great to hear about a good out come like yours . 😍😍

[Tanitha in reply to SlowDragon]

I keep coming back to antibodies and inflammation and wondering whether I have some inflammation causing my TPO and TG antibodies. My 'weak' Coeliac antibodies disappeared when given b12 injections and as there is a connection between gluten and thyroid it sounds feasible b12 may have addressed that. This limited study on the relationship between antibodies, inflammation and symptoms is interesting:

Thyroid antibodies in Hashimoto’s thyroiditis patients are positively associated with inflammation and multiple symptoms

nature.com/articles/s41598-...

[ Title of paper added by admin to help readers. ]

[SlowDragon Administrator in reply to Tanitha]

Thanks for posting

Really interesting research

A) because they accept TG antibodies as significant

B) looking at leaky gut connection

[Buddy195 Administrator]

I’ve seen a rheumatologist for arthritis and found it helpful. I had a steroid injection in my hip, which massively helped reduce pain/ inflammation.

[Sparklingsunshine in reply to Buddy195]

I'm getting a steroid injection in my foot via podiatry so didnt see much point in seeing a Rheumy. The one I saw in 2008 confirmed Fibro and EDS but then discharged me. He's still working at my hospital. He's a nice man but about as much use as a chocolate teapot.

[Sparklingsunshine in reply to Sparklingsunshine]

I have mixed feelings about steroid injections. I've had a lot in my time, at the pain clinic I had loads in my neck and shoulders, I've had a couple for elbow tendonitis, frozen shoulder and recently one in my right shoulder for rotator cuff tendonitis.

I find them very hit and miss tbh. My recent one did nothing. I find as well that even if you get a good result it doesnt last. Maybe I'm just unlucky but they arent that great in my experience.

[Goldengirl01]

I had to have a fusion of my big toe (cheilectomy) I couldn't walk it was so painful I was told the pain would probably come back this was some years ago and I am still pain free. The big toe is up against the next toe instead of space apart but who cares, I think I wore a hospital shoe for a couple of weeks but it's been so much better no problems since.

[Sparklingsunshine in reply to Goldengirl01]

The surgery they proposed is fusing the bones and joints in my arch. Its upto a 12 month recovery and I'd be in plaster for 3 months. Plus there can be complications with infection, permanent nerve damage, permanent swelling or distortion of the foot, or the fusion doesnt work and they have to go back in.

I have caring respnsibilities and dont drive or have access to a car so getting back and forth for hospital appointments or getting around would be very problematic. If I was still in a lot of pain I'd consider it but at the moment the downsides are greatly outweighing the benefits.

[Chickenfriend in reply to Sparklingsunshine]

I have the same. Foot pain on top of my foot. Ortho said steroid shot or fusion. I have not seen a rheumatologist. I am wearing inserts in my shoes and can no longer go for very long walks. I can jump on my bike though. And I refuse to fuse. No good outcome if you ask me.

[Sparklingsunshine in reply to Chickenfriend]

No, looking at the side effects on reputable medical sites doesnt inspire confidence, does it? I know they have to list all possible problems but the list seems long and I'd hate to go through all that only to find it hasn't worked or I'm worse off.

[Chickenfriend in reply to Sparklingsunshine]

Yes, I try to stay away from sugar and sweets and take turmeric. Very good shoes and lacing them skipping the holes on top of the foot seems to help.

[Goldengirl01]

ooh that sounds nasty and there are a few minuses to it, I dont blame you doing a wait and see. All the best for the future.

[Sparklingsunshine in reply to Goldengirl01]

The podiatric surgeon I saw seemed surprised and a bit miffed that I didnt want the surgery, but then they have no real idea about how difficult the recovery can be, especially when you have no transport. Frankly I didnt really care about his hurt feelings lol.

[Goldengirl01 in reply to Sparklingsunshine]

I dont know where you live but I would have offered to take you if I was near

[Sparklingsunshine in reply to Goldengirl01]

Thanks, that's very kind, you have to keep going back every two weeks or so to get the plaster changed post surgery and they wanted to do the surgery 20 miles away in a different hospital, which is stupid as I have a general hospital 10 minutes away from my home.

There's no common sense left it seems. Doctors just assume everyone has a car or someone to drive them. Its infuriating.

[Goldengirl01 in reply to Sparklingsunshine]

maybe your hospital didn’t specialise in that particular surgery. It does beggars belief though.x

[Sparklingsunshine in reply to Goldengirl01]

Oh no they have a podiatry dept. I had surgery there on my foot there a few years ago. In fact I've been referred back to my local podiatry dept for this steroid injection as I explained travelling a 40 mile round trip on public transport isnt ideal when you've had a jab and they've immobilised your foot in a walking boot. The mind boggles.

[Emaych61]

I can sympathise with your experience with rheumatology for EDS. I got referred by a GP to Rheumatology for my HSD/EDS and the person I saw was useless. Everything he told me I already knew and on the aareas I was interested to know more about (problems connected to GI tract, bladder, eyes etc resulting from EDS), he was clueless about; told me I needed to talk to specialists in those areas. He knew how to assess the Hypermobility and what to suggest to help with that and that was it.

Whatever happened to a more generalised knowledge about how the body works as a whole? HSD/EDS doesn’t just affect joints. Apparently some rheumatologists either aren’t aware or have forgotten that.

[Sparklingsunshine in reply to Emaych61]

I find the NHS clueless for chronic conditions. And as you rightly say the doctors will stick rigidly with their own tiny area of expertise and wont dare stray outside the lines. EDS can affect so many other things. Its so much more than bendy joints.

Mine has caused leaky heart valves, osteoarthritis due to knock knees, problems with my feet, gastro problems and autonomic dysfunction. To name but a few. All of which I've discovered myself.

[Emaych61 in reply to Sparklingsunshine]

Makes you wonder how many different specialists an individual with a single chronic condition might end up under. My husband wonders whether I hold some sort of record - for ending up being referred and seen by specialists in (I think) 7, or possibly 8 different areas in a single hospital. Granted I have more than one medical condition, and actually one of the departments was surgery (for appendicitis), but even so.

[Sparklingsunshine in reply to Emaych61]

Yes similar, neurology, rheumatology, ENT, podiatry, specialist vestibular physio, orthopaedics, cardiology and general surgery. I'm sick of them lol.

[Emaych61 in reply to Sparklingsunshine]

Once upon a time there were generalists who could deal with complex cases. Sadly, they are an increasingly rare breed!

[Gill50]

I really do empathise with you over this. Yes I’ve had experience of the Rheumatology department here and I’ve decided that because of their incompetence not to have anything to do with them at the moment. I too have osteoarthritis and I have PMR ( not diagnosed by the rheumatologist for months) and osteoporosis. I’ve found them to be very unsympathetic and only keen to recommend drugs that I’m not prepared to take. Once they realise this they wipe their hands of you, you’re on your own. I also have the osteo in my right foot. I have had steroid injections that have not worked. But that doesn’t mean they wouldn’t work for you. Good luck.

[Sparklingsunshine in reply to Gill50]

I'm going to have them, because you need to try and I've got nothing to lose, quitting the gym has actually helped a lot though. Clearly the workouts I was doing was really aggravating things. Who said exercise was good for your health 😆

I found the attitude you describe myself. I was diagnosed with EDS and Fibro in 2008, I have several medication allergies and intolerances and many meds give me intolerable side effects. So once they saw I wasnt going to take the usual suspects they fobbed me off with the pain clinic, who were pretty useless as well.

The NHS diagnose chronic conditions then leave you on your own. They dont care. Tbh I was a little bit thrown by the offer as I didnt ask for a referral, it wasnt mentioned by podiatry and as far as I was aware there isnt much a Rheumy can do for osteoarthritis anyway. Seemed like a waste of everyone's time.

[Countrykitten]

Rheumatologists don't usually deal with OA.. I'm pleased to see you are being seen by Podiatry. Have they offered you orthotics for your shoes? I don't want to be 'teaching my grandmother to suck eggs' but shoes are very important. (I'm a retired Podiatrist with severe OA in both feet and ankles) As regards surgery, I think you are right to postpone at the moment. It is a long painful process. I had my left ankle fused fourteen years ago. It should have been done years previously but I had to wait until my husband retired to look after me. I had two months in plaster then two months in Aircast boot. You can't take this off so have to sleep in it, which is more uncomfortable than sleeping in plaster. The operation was very successful but doesn't get rid of all pain..It stabilised my foot and ankle so I could walk again without the rigid brace I'd worn for years. When my right foot became much worse my Orthopaedic surgeon said X Rays showed every joint in my foot severely arthritic..We discussed further surgery but decided against it as I didn't want to be out of action for months again and I could walk, albeit with pain..He said he would refer me to an Orthotist , the best around according to him, to make me a bespoke orthotic for my shoe. After several months wait I had an appointment at a local hospital to see a Podiatrist, not an Orthotist! He was a very nice chap and we had a good chat and he said he would get a pair of insoles sent to me.....when they arrived they were like a cheap pair from Amazon, very thin with just some additional material stuck on to balance my gait.(I just went back to making my own orthotics which I've done for yeats) So....make sure you get a Decent orthotic. Make sure you wear shoes with flexible supportive soles and well padded insoles. End of long letter of advice!!! To sum up..Wear supportive padded shoes and hold off on surgery if you can. Good luck with steroid inwjections, they can really help.

[Sparklingsunshine in reply to Countrykitten]

Yes I've had custom orthotics for years and wear them all the time. I have Ehlers Danlos, very flat feet which is what they think has caused the issue. Too much flexibility in my feet and ankle instability has put too much stress on my mid foot. Quitting the gym and cutting down on walking has helped more than anything.

[Countrykitten]

You just have to do, or Not do, whatever helps. Good luck.