RA is running wild, there's not stopping it now. Sugg... - NRAS

NRAS
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RA is running wild, there's not stopping it now. Suggestions welcome.

pinksugarmouse
pinksugarmouse
โ€ข24 Replies

I'm just feeling a bit sorry for myself. The last couple of weeks I have had a bad flare-up despite being on Naproxen and Methotrexate (which never did send me into remission as promised). The GP gave me Tramadol for the pain which was working but isn't so much now. I wish you could get gas and air on prescription, no long term effects etc.

I am worried because my GP surgery know nothing about my condition. I ask them for a medication and they just write it but if I ask for advice they just tell me to speak the Rheumatologist, who can't see me for another 6wks. And why doesn't anyone understand that I am seronegative (a flare up doesn't show in my blood) it's in my notes and it's not uncommon.

My right foot is starting to turn more outwards even in such a short time. My knees are always painful but they are going the extra mile at the moment. I am having shooting pains through my hands, hip and scarily my spine and am scared I will wake up unable to stand or even sit like I have before.

My daughter is 13 and very unhelpful at the moment. She is at the "you are ruining my life" she is most definitely not my carer (not that I would want her to be) but it is frustrating when you are in pain and your healthy teenager has a tantrum if you ask for her to put a vacuum round or even take her own dishes out.

My partner is lovely. What I would do without him I don't know. We've only been together 11mths though and he hasn't seen me this bad. He is great with the cooking dinner, feeding the cat, giving me cuddles but I know he struggles seeing me in pain.

I just don't know what to do. Should I go to the GP and try and get some sort of practical advice? Present at A and E but all they are going to do is surely give me more Tramadol and send me back to GP/Rheumatologist. Or should I just ride it out for another 6wks?

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popsmith1874

I would phone the the help line again t see if you can get a cancellation or even get t see your reumy nurse, that's what I've been doing all week and I got an appointment today or get your go t email them

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Hidden
Hidden

Go to the ER. Don't suffer in silence as 6 weeks is a long time. An ER doctor can get you to a rheumatologist sooner.

Take care

Sue

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helixhelix
helixhelix
in reply to Hidden

I don't think that would work in UK? But you might get a steroid shot.

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Hidden
Hidden
in reply to helixhelix

Oops sorry. Forgot you were in the UK.

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Pea3

Sorry to hear that you are suffering, I know how miserable that is. Do you have a number for your rheumatology nurse as a helpline for when you have problems ? That is who I call & they should get you in with an emergency appointment quite quickly. If that doesn't work go & see your GP & ask them to write to your rheumatology consultant explaining that you are struggling & that should get you an appointment. i hope that you manage to get seen & things improve for you.

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MsYasmin

Hi Pinksugarmouse. Sounds like you're going through a really tough time. A couple of weeks is a long time to put up with a flare. I just wondered if the rheum nurse at your hospital gave you a helpline telephone number? I've used the one given to me more than once and have even managed to get my appointment brought forward when the pain has been particularly bad.

I've only just recovered from a 3 day flare myself and am feeling pretty exhausted by it. Its great that your partner is so supportive. I'm sure you've tried this already but have you thought about having another chat to your daughter about how debilitating RA is? Most people just think "yeah, it's arthritis and you say you're in pain" without any understanding of the other things that are going on in your body and mind. I know I often feel like my body hates me and no one understands. I don't think my children truly understood until I talked them through everything in a lot of detail. It also gave them the chance to talk about how they felt about my illness/how it's changed me as a mum etc.

I would also get in touch with the GP and say the pain relief isn't helping so much and you want something else. In the meantime, keep venting!

Sending hugs.

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Godandme

๐Ÿ’๐Ÿ˜ช๐Ÿ’

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magglen

It is clear the Methotrexate isn't working for you. There are other medications to try. I had to go on three before they found the right one for me and I have been fine on it for ten years [Enbrel]. The important thing is that you don't take 'no' for an answer. Be pleasantly persistant. It is not right for you to be in so much pain. Phone the rheumatology department to speak to the nurse specialist, if they have one. or the Rheumatologist's secretary and 'beg' for an appointment ASP xx

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trufflepig

Hi Pinksugarmouse (Love the name ๐Ÿ˜€) I understand much of what you say - I am Seronegative too. Please discuss other options with your Rheumatology nurse - I am on Methotrexate and an anti TNF injection Golimumumab plus other stuff for other conditions (Crohns and Peripheral neuropathy) I use a pain killer called Tapentadol (Palexia) as it is a long acting Opiate and this works much better for me than Tramadol so it is definitely worth discussing other pain killers with your GP whilst you wait. Unfortunately. Steriod injections never work for me. I have four teenagers who sometimes get it when I'm unwell and sometimes really don't!

Good luck with it all.

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helixhelix

I'm with Magglen on the need for a review of your meds. Taking a NSAID long term should only be as last resort really, so to me also suggests that MTX is not enough for you. And I like her phrase pleasantly persistent... In the meantime could you ask your GP for a depomedrone shot?

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Mandalou

Hi Pinksugarmouse

So sorry to hear you are really going through it.

I echo everyone else's advice and you should definitely be ringing the Rheumy helpline or the consultants secretary. It's not right to be in so much pain all the time.

There is nothing stopping you writing personally to your consultant either, putting down in words how you feel about the medication you are taking.

May I just talk about Seronegative opposed to Seropositive inflammatory arthritis.

Being Seronegative as I am too only means you are not showing CURRENTLY positive for Rheumatoid factor in your blood. There is also the antiCCP test which is more sensitive than the RF test. This can and does change over time.

Regarding flares which are nothing to do with your negative/positive diagnosis however, this will almost certainly show up in your blood tests, either ESR test which shows levels of inflammation or CRP C reactive protein test which also shows levels of inflammation but is more sensitive.

You must be due for blood tests Pinksugarmouse as you are taking Methotrexate?

Next time ask what your ESR or CRP tests showed.

I have been able to plot mine and it's very telling.

Wishing you some relief and all best wishes.

Please tell us how you get on.

Mx

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Mandalou

Oh. I forgot to say you must absolutely NOT ride it out for another 6 weeks!

Get onto it today.... Please, you need and deserve some support.

Mx

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jojo_71

Hi

Most other replies have said what I would say... Change your long term meds to something stronger eg anti tnf. Obviously just metho isn't working.. Also no way wait any time if you can.. Ring rhuemy nurse or try docs for steroid.. NB I always get a kenilog. They are my saviour, although I do know that they don't work for everyone ..

The one addition I want to say, is that flares are just horrid, no one without ra could possibly know how bad. But I think its not even about putting up with it.. We shouldn't because of this... When we flare our joints are being damaged, irreparably. This leads to operations that cost nhs how much, never mind what we go through. .. I don't know where in country you are, but up in Newcastle they are brilliant, they get that flares are bad for all of above reasons and help us stop them.. But you've got to fight.. And as others have said, not take no for answer. You are fighting for future you hun. Take care Jo x

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pinksugarmouse

Hi everyone, thank you for your support and advice. Just a point on the seronegative; I have never shown as positive even when I have really bad flare ups. Not even when my spine collapsed and I couldn't sit up. It just doesn't show up in my blood and nobody knows why but for some people with RA blood tests show nothing even though clearly the joints are in a terrible state. I would have been diagnosed earlier if it had.

I have never been told about the other tests and I wonder if in over three decades anyone has ever thought to carry them out on me. Probably not.

The area I live in seems pretty poor for RA services. I don't see anyone for it except for 6mthly Rheumatology visits where they keep saying keep taking the methotrexate its a great long term drug. Okay super. But what about now I am living now in the medium and short term and I have been on methotrexate and naproxen for over 12mths and if anything have had more flare ups not fewer. I see someone different at Rhematology every time. I request to see a physio (not every week but just a consultation with one) same with a chiropodist (I don't expect them to pay for my shoes but would like some advice). I haven't had any X-Rays for well over 15yrs even though I know my right foot, left wrist and probably right hip are changing shape.

I can't take steroids by mouth anymore. I used to as a child but now they cause swelling in my neck and throat and I can't swallow.

I am going to call my GP surgery and see if anyone will speak to me. It's not easy to get an appointment or even a call back, but I have to try.

Thank you everyone. I will try. As for my daughter she brought me a cup of tea this morning without being asked. I am impressed and chuffed.

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Mandalou

being diagnosed as suffering from Seropositive or Seronegative inflammatory arthritis has nothing to do with what or what doesn't show in your blood when you are having a flare.

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farm123

I was sero negative when I was first diagnosed at 19 and still am 30 years on - many DMARD's, biologics and a TKR later.

I have found it hard with the children as I don't want them to be a 'carer' but mine have grown up with me having good and bad times so are aware there are times they have to step up - they are quite capable of doing the washing machine and dish washer but when I am good they go back to leaving washing in a heap in the bathroom or bedroom floors and cups/plates wherever they last used them. Farm

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Sheila_G

I agree with Jo. An RD flare isn't like having toothache, which in itself is horrible, but when you have your tooth out the pain is gone and no damage done. With RD Pain means damage. You must keep ringing until you get seen. I know none of us wants to be a nuisance but I am afraid if you want to be seen quick this is what you have to do. I do hope you get your meds sorted soon. Best wishes x

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amulla1

Hi there,

I am really sorry to hear about your increasing pain. I have been there to some extent. Have you tried sitting in a hot/ warm water tub with Epsom salts. it may help to distract your mind for a while and relax your joints.

Another long term therapy is to go on a low fat vegan diet. Also to drink fresh veggie juices to alkalise your gut. you could google the Paddison program for rheumatoid arthritis on the Internet and get well informed as to why our body has RA.

Praying that you feel better soon.

Take care

Aisha

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pinksugarmouse

I have been a Vegan for over a decade. It's definately healthier overall but has had no effect on my arthritis.

I haven't been able to have a bath since I was ten (just to clarify I have had LOTS of showers lol).

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pinksugarmouse

My rhematology nurse has offered to inject my knees at my hospital in a couple of weeks because I have waited so long for my referal to the injection clinic. So this is a bit of good news. My tramadol is working even if nothing else is and I will corner the Rheumatologist in a few weeks time. I think that's as much as I can do for now.

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flow4

I just wanted to sympathise on the teenager front! I have two boys now aged 16 and 20. I had a really terrible time with my eldest, who went off the rails big time just as I started to get ill. The stress of dealing with all that definitely did not help. Thankfully, he grew up and got back on track, and for the last year or so has been generally pleasant company. :) He's also now able and willing to be more helpful, so he cooks and cleans up regularly once a week, and will generally help other times if I ask... On the down side, my 16 year old has just become moody, rude and difficult!

I do think it can be quite scary for our kids to see us ill and vulnerable. Kids generally rely on their parents and want to see us as strong, capable and reliable. When they hit their teens and their own lives and emotions feel so out of control to them, I think they want us to be totally in control to keep them feeling safe, and they don't like it when we're not. Some of them turn that fear into anger or disdain, and that's pretty hard to take, even if you understand what's going on in their heads... I'm hanging on to the hope that their experience of living with parents who are sometimes vulnerable will make them more thoughtful and compassionate adults in the long run!

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Juliachoo

Phone youโ€™re Rheumatologist Nurse.. they might organise a steroid jab for you. Methotrexate hasnโ€™t sent me into remission either, I am now waiting for all the screening g for biologics...

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Hidden
Hidden
in reply to Juliachoo

Juliachoo this post is 3years old ๐Ÿ˜Š

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Juliachoo
Juliachoo
in reply to Hidden

Oops put it down to brain fog ๐Ÿ™ˆ

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