Never ending flare up.

[IzzyLane]

It started in my feet (again) and progressively got worse, now it's all over me again. I feel somewhat like I did just before I was diagnosed.

So much pain, and not a lot of sleep.

Any suggestions for my exhaustion, and horrendous pain?

[Susan55]

Morning IzzyLane, I know just how you feel. my feet, hands all painful and swollen but also both shoulders left knee and right elbow 😔.

I'm taking sulfazaline and find naproxen helps with the pain and swelling although at my last appointment with the rheumatologist I was a little confused when she asked "what exactly are you taking the naproxen for " I really wish I didn't need it but it's the only painkiller that helps me function.

[missymo]

Izzylane is it burning pain?? If so i ve had it for a YEAR!! Still trying to find a consultant to treat it!!

[oldtimer]

Do contact the rheumy team to let them know that you having problems. Nag nicely for better control.

[kalel]

sorry to hear about your going through. Have you ever read some of the paddinson programme podcasts. There are also people like Dr Gregor from nutritional facts org and Dr Mc Doughall and the medical medium that you may want to check out because I firmly believe that along with taking some of the guys advice and keeping my self as fit and healthy as poss and seeing a functional health practitioner these have been things that have really helped my Ra. If you need to talk you can always message me. Sorry to hear your suffering atm

[Karen77]

If you can take time off work, do it. Let yourself rest as much as possible, and get as much help at home as you can. I know it's not fun. Do your best to ride the wave.

[PFKAAde]

Hi IzzyLane

Sorry I must have missed this post.

How are you feeling now? I'm not sure if you've ever said what your medical regime is. What drugs are you on and are you seeing a rheumatologist? Is there an emergency helpline number?

Is your GP supportive and accessible?

Apologies if I've forgotten this.

Regards

Ade

[IzzyLane in reply to PFKAAde]

Hi Ade,

Sorry for my delay in response. Thank you for your reply, it's always lovely to hear from you!

Still got a fair amount of pain, plodding through with it.

I am on 22.5mg of methotrexate taken once a week currently, and taking folic acid each day either side of methotrexate day.

I use ibuprofen as an anti-inflammatory and either paracetamol or co-coda mil as pain killers (saying that, they don't kill much pain!).

Yes, I see a rheumatologist, about every three months. But they're all over the place, I rarely see who I'm supposed to and they're only seem interested in what blood tests say, which in my case isn't really the full picture.

I see my GP in between rheumatology appointments, but again, they don't do huge amounts.

Also, I see a physiotherapist, who does take a more holistic approach and asks about pain management, coping, work and sleep, but he again can't do a lot about what I tell him.

I'm off to see a posiatrist on Friday, as my feet cause me a lot of pain and problems.

Sometimes I think maybe I want too much, maybe I'm going to have to put up with this more.

Thanks again Ade, always nice to hear from you.

Izzy

[PFKAAde in reply to IzzyLane]

Hi Izzy

Have you been on the MTX for very long? I'm guessing you've read enough to know it can take some time for it to work, but by the sounds of it you've been seeing a Rheumatologist for a while? I was on it for 16 weeks and it hadn't done a thing, and then literally overnight it started to work (or I went I to spontaneous remission, either way I felt a lot better).

It doesn't sound like it's doing enough on it's own, I'm just wondering if they could / would / should think about adding a second DMARD in.

Try not to get too down, we all know the feeling. It took me a few years before I'd been through most of the available drugs and either found they didn't work (Leflunomide), made me feel (and be) constantly sick (MTX) or caused adverse reactions (Sulfasalazine). And I then I started on biologics and they have been incredible for me. Enbrel didn't work but Humira has for idk 7 years or so.

As you are young (IME) they are more aggressive with the treatments and offer biologics as soon as they can. At least for me.

It's in their interest long-term to keep your condition as managed as possible otherwise it would cost more to treat you when you get older. Sounds a bit callous but you know what I mean, and the NHS has to work like that to a point.

Don't let them off the hook, if you feel bad - let them know, repeatedly! It tends to be those that ask most that get most with the NHS. Do it nicely but try to be assertive. If you aren't satisfied keep on at them. Ask how you are supposed to manage and point out all of the negative things you experience, pain, fatigue, depression, more pain. Sure, they've heard it all before, but you need them to know how badly YOU are affected.

If they don't know they won't do anything.

I'm probably telling you stuff you already know, but either way.

You don't 'want too much' by the way. There is a degree of learning to 'put up' with or manage your condition, but you have the right to be listened to and treated with whatever drugs are available to help you.

It is possible to get into remission, and I think until you are there you won't realise how bad you've been feeling.

Have hope Izzy, I was pretty bad for some time, my inflammatory markers were incredibly high (although weirdly they don't always seem to reflect the pain you feel), but I found a suitable treatment. Either that or the disease progressed to a point where it is no longer so active.

I have had breaks in my current treatment (for surgeries for example) and have not had immediate negative responses, so I live in the hope that the disease is kind of 'dormant'. For now.

I remember reading a long time ago that RA can, of it's own accord, go into remission for long periods. Maybe I'm experiencing one of those, idk. But there is always hope.

Have you read up on the dietary aspects of autoimmune disease? I'm sure Kai-- must have left you some links. 😀

When I was younger I wasn't prepared (if I'm honest) to try changing my entire diet / lifestyle. There wasn't an awful lot of evidence or research back then do it was a leap of faith. And it's a big sacrifice to give up all of the things you like (alcohol was always the biggy for me!). These days there is a bit more evidence to show that what we eat and drink has a profound effect on how we feel. Seems obvious I guess, but what isn't so obvious is how much it can affect us.

If you were willing / desperate / interested / strong willed enough, it could be something to look into. But it's your call, it doesn't come with a guarantee and isn't easy.

Anyway enough waffling, children need to go to school!

Take care Izzy.

Ade

[Hidden]

Hi IzzyLane,

sorry to hear how bad you are feeling at the moment. Hope these links may help:

arthritiscare.org.uk/managi...

britishpainsociety.org/

painconcern.org.uk/

escape-pain.org/

britishpainsociety.org/stat...

Best wishes

Beverley (NRAS Helpline)