The title is a bit dramatic but, following up on my last post I put my big girl pants on ( with difficulty because my hands and wrists are quite sore and not working right) and had an appointment with the mental health nurse. She was lovely but said if I'm in pain we need to address that rather than giving me happy pills. That sounds reasonable to me and she booked me a phone call with my new GP. To be fair to new GP he didn't know my history too well, he knew I have a uncertain diagnosis of rheumatological disease.
I explained in no uncertain terms that I'm not coping with life, work and being in pain and that I can't live like this. He allowed there is nothing he can do...I'm already taking co codamol (30/500) which they very generously prescribe two per day and I'm not allowed more opiates because it's a rheumy disease.
He lost his mind when I said I'd put my steroids up myself and when he suggested they'd run out I just told him I'm a vet and have access to steroids. Probably shouldn't have said that.
He tried to lecture me about the risk of steroids and I had to tell him just at the minute I don't care , I can't live as I am and if I become diabetic I'll cross that bridge when I come to it.
I didn't hold back and still the answer was he couldn't do anything. Where does this leave me??
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wilbertjellyfish
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Hi the nurse is right Some of these nurses are very good now a days
Better than som docs pity she was not allwed to prescibe
I'd keep at docs
The pain hss to be addressed as nurse said
The Co.codamal may help some ,but for some The Co.codamal woould not even touch the pain
The opiods not sure there either ,everyone's history is different though, but lots of pain meds and opiods are the only way ahead for lots as well suffering from long term pain and needs addressed and sleep if any issues there ,I'd keep knocking on that door
It sounds like the GP was at a complete loss as to what to do, as he said, but that's no help to you. There must be something that can be done.
If a higher dose of steroids helps to relieve (at least some of) the inflammation, surely your prescription could be increased or a systemic injection offered while the underlying condition is further investigated?
If pain relief is needed beyond the current prescription, there must be other options besides cocodamol. I don't have experience of this myself but am sure others on the forum know about pain relief in the context of rheumatological disease.
Some of this might need attention from rheumatology, but steroids and pain relief don't obviously seem to be beyond the scope of GP practice. Is there another GP you could see? (maybe leaving the self-medication options out next time?!). Could they make an urgent referral back to rheumatology or a pain clinic?
Really hope you can find someone who will look into the situation further for you, and identify some sort of solution even if it's an interim measure. It is so hard (and frustrating) when medical professionals throw their hands up in defeat and leave you no better off.
I do understand the consultation doesn't know what's actually wrong and nothing seems to work other than steroids, so there isn't much hope for the GPs. But yes you'd think there was something
You would, and for some rheumatological conditions - I'm thinking of polymyalgia rheumatica here - steroids ARE the primary treatment. So it's hard to understand why you couldn't be prescribed a higher dose for symptom relief while the further investigations are still ongoing. We all know that steroids aren't ideal for lots of reasons, but if they're the only thing that works...
I have consistently found my gps to be very unwilling and unsure to do anything with my autoimmune stuff other than listen, nod sympathetically and then tell me to speak to the relevant hospital team. Luckily I have pred on my repeats at the gp and am now at the point where I increase them when I know I need to without checking with anyone. God knows what I would do if I had to give an explanation to the GP every time as they are so scared of pred. I also find my GP surgery to be much more risk averse in terms of blood tests etc too, so whereas my consultant would just shrug about some of my results they would be scurrying to have me do repeat/additional testing.
None of this is criticism of the GPs because of course they are responding to real concerns, however it may provide some explanation as to why you feel so poorly served by them. In short, I think they just don’t like getting involved with rheumatology stuff!
Is there any way you can get back in to see your rheum team? That might be the most useful way forward.
I think from the gps perspective issuing more steroids, prior to a diagnosis, may mask symptoms and make getting a diagnosis more challenging. I had a severe stroke due to long term steroids. I had polymyalgia and GCA for which steroids are the only treatment. If you’re a vet, you are probably aware of the risk of adrenal insufficiency, which is life threatening, and interferes with every aspect of your life. I can become very ill with hood or bad stress, and need to carry an emergency injection for vomiting, injury or severe illness, it’s not fun. So I always urge others to try different meds if available. Are you on a nsaid, you could try brufen or naproxen, regularly for a few days, to see if it helps. I’m on steroids for life, as my adrenal glands are 90% atrophied and will never recover. It’s also meant many of my other hormones are non existent, and contribute to my fatigue and difficulty shifting weight.
Applying heat or ice often helps, or use of supports on painful joints. Generally most rheumatologists treat the condition, but expect the gp to manage pain. Are your inflammatory markers raised, if so that suggests an nsaid would help. You could always ask for a second opinion from another gp. Hope you find something to ease your pains soon.
I'm on an n'said daily, 8 paracetamol daily with some codeine. My adrenals aren't working either, I've been on steroids for. 7 years. I do understand there is a risk but I felt awful before the increase. Not just the pain and stiffness all over.
I've tried really hard to reduce my steroid dose and twice last year ended up in hospital.
I was hoping for something else but I just couldn't cope any longer.
Perhaps you could try changing to an alternative nsaid, Etoricoxib is one that rheumatologists like, and many rheumatology patients use, and it’s only once a day. The issue with steroids is that if you have an ultrasound or mri it may not detect the inflammation needed to obtain a diagnosis. If you get down to 5mg pred, it would be worth getting your cortisol levels checked, unfortunately tit can’t be checked when taking a therapeutic dose. Checking would let you know if tapering lower is possible. Have you tried tens machines
Yes the acth test will register undetectable at doses above 5mg, because your body recognises your getting adequate cortisol from your steroid. You won’t be able to check adrenal function till you’re taking less than your body needs, which endocrinologists say is 5mg or less. I had to switch to hydrocortisone for testing as the assays don’t detect prednisolone, unless you send to the Imperial in London, then I switched back after the second SST. So if you ever get down to that dose that’s when you will know how your adrenals are. Hope you find something to settle things for you. If you eventually get a diagnosis it may be that you’d be eligible for biologics, which would help getting your steroid dose down. 🤗
I got my Co.codamal halted, for takeing the Paracetamol yiur dose as doc said not allowed got taking off repeat ,Was not doing much anyway ,I had choice
Picked the Paracetamol as that's my first port of call ,then the add ons other pain relief
Seemingly I've been told by a few the
Paracetamol helps the other stronger pain meds work better
I only wish I knew, this sounds like a desperate situation as a vet I’d assume you’re not given to panic or irrational decisions so I believe you need to see a specialist. It might be nothing to do with RA but something else going on. I wonder if you’ve got any private consultant GPs who might be able to give a second opinion? I know it’s not an ideal solution but starting again with a GP who might have a more open mind could be helpful. Are you not taking any RA medications at the moment ? Surely the RA consultant must see that you need help and pain is not a mental health issue but very real especially when visible in swollen and damaged hands. Soon you won’t be able to practice with this issue unless you get help so it’s vital to do all you can to stop things getting worse. It’s bad already so don’t stop or give up in desperation. But keep going and find some help you need and deserve it. X
Thank you. I don't think I'm irrational but I probably don't complain enough and just try to get on with it. I'm on lots of meds but nothing really works. I've been considering getting a private appointment with a rheumatologist...I'm considering flying to London or something. Work is a real struggle at times and I can't afford not to work.
Gosh, I really feel for you. You may well be right that you are stoic and don’t complain enough.
M-L has made some good points, it’s a question of how you can find a ‘good’ rheumatologist, last thing you want to do is travel a distance and not find the help that you are looking for.
Does your hospital have a pain clinic? I’ve heard mixed reviews about them though.
What is really ironic is that a lot of us on Thyroid U.K. used to joke that we would get better treatment from our vets. It’s really tough that you are in this position. I hope you can get the help and support you are clearly needing.
Actually it’s so funny but our cat was neutered and had an unexpected complication. So rang vets they said bring her in now and they operated and she recovered well. They used to see her weekly and were so lovely. So I said to my husband if I ever need a hysterectomy I’m going to a vet there’s no waiting list and they really look after pets!
Here abouts even vets are hard to come by. We’ve been with Roland for years but I’ve heard his receptionist tell people they have a waiting list for pets to become patients. Our cat is diabetic on insulin twice a day and lets him take blood but a locum tried and had to ask me to come back as the huge Australian vet rugby player vet had been bested by a 4 kilo moggy. lol He said tomorrow theirs 2 vets plus 2 nurses so one for each limb of that bundle of spitting fury. The earn their money!! My in laws farmed as did my mum and dad. But not livestock only arable. Although my husband remembered his dad’s first tractor that he talked too and they kept the heavy horses as pets. We’ve some lovely photos of the horses at ploughing matches and all his dad’s ploughing certificates. My dad was useless he never won.lol xx
Mine is only independent vets where we are . It's only a small practice but we have a waiting list because all the other practices are corporate and charge a fortune.
It’s hard these days I don’t know about London but RA Consultants are like hens teeth here but pay and no problem. As you say you need to work so perhaps it’s time to put a stop to this GP and the angst but take things further. I know if I were you I’d see someone who actually doesn’t put things down to mental struggles but a very real issue with physical health. Xx
I feel your pain. And it sounds so very familiar. I have been where you are and think I may have finally started to get on the right path - and that has been by just telling everyone- including the consultant, what I want done. I had no choice. They found huge amounts of inflammation in my hands in June (I now realise this started at least 6 years ago) but didn’t look at all the other parts of me that hurt at the same time. So started gently on meds, telling me it was more likely fibro. Then when I saw them 3 weeks ago they still tried to tell me to persist with the meds and not increase- I told them in no uncertain terms that I cannot live like this in this much pain anymore. They redid X-rays and tests and all of a sudden a week later I get a call to say they are doubling everything I’m on. I guess they found something!??
The gp won’t give me pain medication either. One told me to take some naxproxen and go back to work - what did i expect her to do. I was already on max dose and have been for years. I like you also take co-codimal and now manage my own steroids just to keep going.
But I’m realising that this is all starting to come together after I stuck with the methotrexate that wasn’t working and when I came off the steroids I ended up in hospital- then I saw the consultant soon after who found the inflammation and now it’s all going in the right direction - but have had some ‘interesting’ times along the way- not least last week.
I’ve just brought a plug in heat mat and have used it when I sit down. It’s amazing and has really helped reduce the pain!
Hey 👋 You've been in pain for years haven't you, I can remeber chatting few years back (when I was not long diagnosed and felt the same pain as you).
Medics really need to determine a diagnosis and get you on the right path, I would as a priority look to go private or (lesser choice) keep pressing your hospital rheumatologist. It's not conductive for you medics saying they aren't happy with the steroid use whilst unable to offer an alternative.
Maybe it's time to be less stoic and put yourself first, if I remember correctly you are incredibly busy both professionally and family and tend to put yourself at the back of the line ? You can't pour from an empty cup xxx It's been years, you deserve help and some sort of resolve to your symptoms.
Makes me upset seeing how many rheumatoid patients are left so suffer, truly believe with reference to NHS the squeaky wheel gets the oil, don't let this drop . It's SO tiring and it wears you down doesn't it having to keep battling but so does the pain .
Wish you all the best and if there is anything we can do help xx
I don't know where you live but when I was first diagnosed in 2014 my gp advised me to go privately initially as the waiting list on the NHS was six months plus and I was losing the ability to walk. I saw a private consultant at a Spire hospital in Cambridge and he was very good. Prescribed ( which I had to pay for) wrote a letter for me to give to GP and eventually NHS rheumatology. It was well worth it.
When I was first diagnosed I also went private, she recommended a steroid injection...my GPs point blank refused to give it, so two weeks later I went back to the private person and paid for it. I think my issue is that whatever is wrong with me is very difficult. Difficult to diagnose and obviously very difficult to get under control. Maybe no one can sort it out. They took a pile of blood for tests so I'm going to try to stick it out and wait on those results...then see.
However I might be in touch about your Cambridge consultant. I could fly over from Northern Ireland
Has your doctors surgery got a pharmacist that you can speak to? Mine was very helpful the other day when I had a phone consultation with him regarding pain management.
Yes they do have a pharmacist. He'll occasional ring me and I'll have to put him right about things. Like the last time he rang about my bloods, I have to have them taken at the hospital because the doctors won't do hospital bloods and he was saying they were out of date but I'd had them done the previous week in hospital. 🙈However, I do likely need to look at other options so it might be worth a shot.
this is probably no use at all but as a fellow Stills Disease patient I understand.
Back in 1979 when I was diagnosed aged 17 I was prescribed steroids, Indocid slow release capsules, distalgesics, enteric coated aspirin and iron tablets as far as I can remember. I weaned off prescribed meds by my mid 20s but have always had to use codeine based meds for pain. My memory tells me that the Indocid capsules were very effective for me.
Hope you can find some way of getting relief soon. Thinking of you.
Not allowed opiates if you have rheumatological disease...in case you get addicted. I've had oromorph in the past when they thought I had pneumonia but it was really some sort of lung inflammation and couldn't breathe. 🤣
I’ve had RA for about 7 / 8 years and am in my 70’s now. At first I was prescribed hydro chloroquine and naproxen, then changed to methotrexate, hydro chloroquine and naproxen. About 2 years ago I had a heart attack and then was told no more naproxen. I asked both my GP and RA specialist about pain relief and was told there was nothing except paracetamol ( which don’t do a thing for me ) . As my wife takes Zapain ( 30 / 500 mg codeine phosphate paracetamol) I tried that and it worked, so I went back to the GP and suggested that I was prescribed them and got the ok. I take them as required, not the suggested doseage . I know it’s an opioid but they certainly work.
I take a mix of paracetamol and codeine. I have the 30/500 on prescription…2 daily so take them in the mornings to help get out of bed. Then I have sulphadine max 15/500 from chemists and normal paracetamol. I take two tablets four times daily at the minute. I no longer know if they work if it’s in my head..
Plus a n’said.
I’m just so stiff and one of my wrists throbs and is weak, like I can’t eat a yogurt with a spoon held normally.
I too have had this 7 years but it started when I was 40. I’m trying to keep working and obviously have the kids to care for. My husband is very helpful and supportive but basic things are a struggle.
Thanks everyone for all the support and help. I’ve increased the steroids and feel much better in myself. My appetite is better and I’m not as stiff. Not pain free but much more manageable.
I’m planning to write an email to the GP and consultant to explain all the issues.
I might also apply for PIP. I think I need to accept that I’m not likely to be ok for a good Period of time and possibly be more realistic about the future . Despite several friends telling me I should I’ve avoided it because I couldn’t face the rejection and didn’t really believe I was bad enough but maybe I am. A blue badge would be handy for all the medical appointments if nothing else.
I’ll let you know if and when things change.
Having this forum and all your input really is a massive boost. Take care …and keep taking the tablets.
My rheumy nurse is brilliant i tend to go to her first as the drs don't want to know when i ask about my RA. They say it is up to thee hospital what they do with me. xxxx
I have to say, I too have been told no steroids. I prefer that, they are very destructive. Keep up to speed with tour mental health practitioner, I always feel so full of gratitude after seeing mine. RA is awful, as a usually fit and strong woman, it's a chunk to swallow
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