sylvi4 years ago

Oh my darling i wish i could say something that would help you my sweet. The only thing i can suggest is keep on at your rheumy consultant. Hugs darling.xxxx

Fra22-574 years ago

It's strange how some of the biologics start to work for some people.I have also tried 3 and now on 5th week of my fourth...Baricitinib so hope it works for both of us.do you have a DMARD with it? Pain meds I take are Pregabalin. Couldn't function if not on that along with prednisolone and sulfasalazine. I did ask for morphine patches but was refused.all you get from doctors is give the new med time .

sjhewitt424 years ago

Hi

The slow release Tramadol may be better as it lasts longer but I must be honest I can’t take it as it messes with my head and makes me tearful. I have oral morphine when it gets bad but it makes the pain distant but doesn’t go away. Are you on any anti inflammatory medications at all. Etorocoxib (so?) is quite good. Perhaps a trip to your GP is in order and a referral to Rhumatology again to sort a different med. Hope this helps xx

Bizzita4 years ago

Thanks all - I’m also on Naproxen but again, I don’t really feel any benefit.

It’s so frustrating because I mention pain to my Rheumatologist (or usually the nurse) and they always say see your GP... the GP always then defers to rheumatologist so I rarely get anything done!

I have a follow up with Rheumatologist/ Nurse on 1st Oct so not too long to wait I suppose but it’s so frustrating because my inflammation markers are never really high so they always dismiss the pain.

I hate this disease. I hate it.

But thank you all x

Darwin in reply to Bizzita4 years ago

Hi my markers are never really high either but I have a lot of damage to the joints of my fingers and wrist. My rheumatology nurse said it was because most of my damage is to the small joints. (Fingers wrists ankles) x

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MissMinto4 years ago

Hi Bizzita,

RA - the disease that keeps on giving - is a nightmare to live with and chronic pain is an insidious debilitation.

What makes it worse is it sounds to me that you are just being passed from pillar to post with no-one really taking ownership of your wellbeing.

Maybe that's what you'll have to do, by ramping up your 'demands'. When you see the nurse in October ask for her email address so you can keep her informed of your progress (or lack of) and then keep badgering. It is not OK for them to keep fobbing you off - it's their responsibility to a) get the level of disease activity under control and b) ensure you have adequate pain relief.

See your GP and ask for a referral to your nearest Pain Clinic; at the same time it might be worth discussing changing your rheumatologist - sometimes people post their location on here asking for recommendations, because it's really important that you feel you have the support of someone who's fighting your corner and it doesn't sound like your current team is doing that.

One medication that really helped me is Amitriptyline which is often given for nerve pain (which I get from repeated outbreaks of shingles as a result of long-term immunosuppression). One of its other uses (in higher doses) is as an anti-depressant and I take it last thing at night as it sends me to sleep. Somehow through this mix of qualities it has really improved my quality of life - maybe it's just because I get a really good night's sleep every night, or it's the pain-killing element or a build-up of light anti-depressant, I don't know (or all three!) but it really has made a difference and might be worth a try.

I do know that pain/depression is a vicious circle and can really take you down if you don't get on top of it. You are young, with a lot of 'working life' left in you and there are a lot of really good pro-active practitioners out there - just take the lead and set about finding yourself one. Good luck X

Simba19924 years ago

Many in your situation, who have tried many meds find help in LDN. Perhaps worth a try.

ncbi.nlm.nih.gov/pmc/articl...

MissMinto4 years ago

You might find this an interesting read:

arthritis.org/living-with-a...

Bizzita4 years ago

Thanks everyone.

I am currently on medication (Prozac) for depression and anxiety and am seeing a counsellor each week.

I think it’s a combination of pain, exhaustion and the first week back at work after 8 weeks holiday. I am just really, really struggling.

I have managed to get an appointment with my GP for later today to see if there’s anything that he can prescribe.

I have tried amytriptline in the past and sadly it had some horrible side effects.

I’ll see what the GP says later.

Thanks again for all the advice - I’m glad i found this site.

PFKAAde4 years ago

Hi Bizzita

Interesting that you don find the naproxen useful, I have always found NSAIDs (usually diclofenac) to be the most effective type of drug for RA type pain. Way more effective than morphine for example.

If the naproxen isn’t working I wonder if it might be worth looking into different NSAIDs? They aren’t great for you, but needs must and all that.

All the best.

🙏🏻

Ajay5754 years ago

Hi there is lots out there to mix and get the right balance and sleep is important.you ask to try TRAZADONE for sleep and you can take with other meds .and different painkillers for day it is a balance though specially with working and wot suits you hopefully doc can fund a solution today for you

Bizzita4 years ago

Just got back from the GP - as a short term solution he’s prescribed slow release morphine (Zomorph) tablets, but will look at bloods when I have them done next week and liaise with consultant.

At least I feel like I’ve been taken seriously this time, although it took me breaking down in tears for it to happen.

Thanks again.

Nessa28 in reply to Bizzita4 years ago

Make sure it's ok to drive on them x

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Bizzita in reply to Nessa284 years ago

The GP said to give it a couple of days to see how I react so I won’t drive over the weekend just in case.

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Ajay575 in reply to Bizzita4 years ago

Hopefully it helps and will be a low dose sometime a low dose here and there and a mixture with other tabs does the trick good luck

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medway-lady4 years ago

My goodness me thats tough I don't know about any really strong pain medications myself but my mum had morphine patches as she had spinal fractures. She managed a better life on them without any bad sise effects as far as i know so might be worth asking about them. I hope you do find something soon and my sympathy to you in such horrid pain.

kaypiercy4 years ago

Hi

I do really sympathise with you, RA is a wild untamed animal of a disease. You say you're a teacher, teaching right now, in today's world, here in the UK, is just about the most stressful profession you can undertake. I was a social worker for Children Services and I found my pain levels rose exponentially in sync with my stress levels, I also saw first hand the intorarable stress that teachers have to cope with. You could somehow look at trying, combining your pain drugs with reducing your stress level, tall order, although if you could reduce your stress levels it may help you in reducing and manage your pain. You could also talk to your GP about alternatives like Cannabis oil seems to be working for some. Like others here I think if you speak with your GP and discuss your options. I wish you the best (hugs).

Kay

Bizzita in reply to kaypiercy4 years ago

Thanks - it’s incredibly stressful. In fact, I was signed off at the end of last term for 5 weeks he to stress/ anxiety. I’m seeing a therapist and am on meds which are helping - I think I’d be in a much better place mentally if I wasn’t find the job near impossible due to pain. It’s never been this bad before and never impacted by ability as a teacher. It’s a vicious cycle and I keep saying to myself if I’m like this now, at 36, where does it end?

Thanks for the message x

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VeronicaF in reply to Bizzita4 years ago

don't look to far ahead Bizzita, that's what I think gets us all down looking ahead when were down with pain wondering how bad we will get in the future.

but what helps me is-we can only live one day at a time moment to moment

let tomorrow take care of it self.

the things we fear never really happens in the way we think they will.

so just take today, one step at a time

I mean this is a kind way ,its what helps me get through the horrible days we have

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Bizzita in reply to VeronicaF4 years ago

Thanks and you’re right - just what I needed to hear today x

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Bizzita4 years ago

Just thought I’d update you all - the morphine is starting to kick in and the pain isn’t quite as unbearable. The stiffness is still there and I’m hobbling around the place with a bit of difficulty but I’m much more upbeat now. The main side effect for me is intense sleepiness 3-4 hours after I’ve taken the morphine (they are slow release).

Thanks again everyone x

sjhewitt42 in reply to Bizzita4 years ago

Glad the pain has eased a little. Morphine makes it a little distant but it’s still there. It’s tough when you’re the main earner for the family too. I’m an accountant.. my husband has a factory job and I have 3 children so there’s no way I can’t work and it puts an added pressure on you which I dibs think helps with the pain/fatigue. Be kind to yourself and realise it’s ok to sit and chill when you can. xx

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