New to this....: Hi Everyone, For the past couple of... - NRAS

NRAS

31,585 members38,357 posts

New to this....

kymmie92 profile image
kymmie92

Hi Everyone,

For the past couple of months I have been having severe pain in my feet and hands. I saw my GP who sent me for blood tests and they came back with elevated WCC, ESR & CRP.

I also had low Vit D so I have been put on a months course of that. I was told to have my bloods redone which I did, I got the results on Tuesday and the ESR & CRP are even more elevated! I ended up in A & E last Friday as the pain was too much and I was struggling to walk at work, I was prescribed Tramadol to ease the pain until I saw my GP.

So I have now seen the GP and she has referred me to Rheumatology, she is unsure what it is as my pain and stiffness is in several joints but she said most of my symptoms point to RA or IA.

I just want some guidance as to what the next steps are and if anyone is suffering with this close my age, I am 25 years old, I am worried this is going to stop me from doing so many things.....

24 Replies
Hidden profile image
Hidden

Oh dear Kymmie, not close to your age but there are definitely people on here who are. Only diagnosed 3 months myself and hope yr rheumatology appt is soon. First thing they did with me was ultrsound hands and give me longlasting steroid shot which really helped with pain while waiting on anti ccp blood test then meds. Spent my time dr googling and panicking. Hope you get some answers soon, it is stressful waiting.

Wish you all the best

kymmie92 profile image
kymmie92 in reply to Hidden

They have rushed me through as an urgent case so I have had to have the blood tests and urine tests already so they have the results when I get there.

I am finding the pain so unmanageable, I am off work at the minute because I am still struggling to walk, the Tramadol whilst makes me sleepy and means I can finally sleep through the night (insomniac too!) does nothing for the pain. I am thinking of going back to the GP to see if there is anything stronger they can give me or something to target the pain more.

Thats all I am doing is researching both conditions online to see what I can do in the meantime to ease the pain or prepare myself for the appointment but you're right, I am worrying myself like you have done. :/

Hopefully I have answers soon. :)

Hidden profile image
Hidden in reply to kymmie92

You ve just reminded me why i take the drugs! I do hope they get you adequate pain relief and some answers soon. It is so stressful not knowing and being in that much pain, really feel for you. Good luck with emergency appointment.

kymmie92 profile image
kymmie92 in reply to Hidden

Thank you Kerena,

Me too, I shall update once I get my appointment through..

Please don't worry yet. It will be a long and frustrating road to get treatment if it is one of the inflammatory diseases, but for the vast majority of people once things stabilise things become pretty normal again. I have been diagnosed for 7 years now and in remisssion for the last 5 thanks to the drugs, and am 95% normal.

There are quite a few people your age on here, so I hope they will respond to you too. However bear in mind that many will be at a similarly early stage, or part of the minority who have the most difficult disease. From using this forum for so long I have seen hundreds of younger people appear, have a dreadful 6 months/year, and then find a treatment that works for them and we don't hear from them again as they are off living their lives again.

And if you must google (we all do!) stick to the reputable sites like NRAS.org.uk. or arthritisresearch.org.uk

kymmie92 profile image
kymmie92 in reply to helixhelix

Thank you.

Part of my lovely, adorable qualities (as my fiance calls them) is that I worry, I tend to worry about everything, its just who I am :)

Thank you, I hope that once diagnosed properly they can find a medication method that works for me :)

I have been researching the condition in more detail more to prepare myself too, just in case, but yes I shall try and stick to those sites! Thank you :)

Just by reading some posts, I see that you are all such lovely people and are very supportive and I hope that if anything comes from my diagnosis is that I can help others just like you guys are.

helixhelix profile image
helixhelix in reply to kymmie92

It is worrying, particularly at this stage when so much is unknown, so I would be surprised if you weren't. I was looking at websites for wheelchairs in the first weeks (I now walk miles every day and have no idea what I would do with wheelchair!)

However what you will need is patience - nothing happens quickly in RA world, so steel yourself for a wait. Even an emergency appointment can take weeks. Also talk to your GP about anti-inflammatory drugs as you might find them more effective than painkillers.

kymmie92 profile image
kymmie92 in reply to helixhelix

I hate the unknown and I know that with this I must be patient. I just worry that this will affect my fiance too, I don't want to be a burden on him. I have spoken to him about it and he reassures me that nothing will stop him loving me and that he will always be there for me, but I still worry about the added pressure on him. Especially as we are buying our first house too.

I shall try and book an appointment for tomorrow or some point next week -Thank you!

Sounds like you are in good hands so don’t fret.... one thing you can is, once you get your rheumy appointment date, is to ring them and see if they have any cancellations and can bring it forward so that your wait isn’t son long.

There are plenty of posts here on being newly diagnosed and are worth trawling through for useful tips. NRAS website have some good info as well.

All the best

Ali

kymmie92 profile image
kymmie92 in reply to Ali_H

Thank you!

I am trying to remain positive and hope that we have caught it at early onset. (The worry side of my brain says not but I push those thoughts away!).

I rang the appointment line today and they said they could see on my file it was put through as an urgent appointment request and if I don't hear by next week I should contact them directly. So that's something, its just the ongoing pain; I have tried the Codeine combination with paracetamol and ibuprofen, that doesn't work so then I went to A & E and was given a Tramadol combination with paracetamol and ibuprofen, aside from making me sleepy that doesn't seem to be working.

I worry about getting up in the morning as I feel like I am going to fall/trip. Luckily I will be with my fiance for the rest of the weekend into next week, so he will help me. Its just a struggle at the moment :(

But thank you, I shall continue to look through.

Kim

StormySeas profile image
StormySeas in reply to kymmie92

Kim it took me ages to get something for the pain. I now use Oramorph and Paracetomol for emergencies.

kymmie92 profile image
kymmie92 in reply to StormySeas

Whats Oramorph?

I am back to see the GP on Monday at 0920 to at least get better anti-inflammatory meds so I can at least get back to work next week! Hopefully....

StormySeas profile image
StormySeas in reply to kymmie92

It’s a fairly heavy opium-based painkiller, cleaner than Tramadol I believe. It might not be suitable for you but it was prescribed for me for emergency use by a GP when I told him the pain was unbearable.

It’s not something I take regularly and I think it’s highly addictive but that, in combination with Paracetomol is what I’d take if I were to have a sudden flare.

If you do have RA or an inflammatory condition like it, the idea is to get it under control with other treatment so you’re not in acute pain.

The type of disease I have comes on very quickly and is very painful and Naproxen (a commonly-prescribed anti-inflammatory) doesn’t work fast enough - although that’s what I was given to start with.

It’s tricky because I’m sure GPs will be reluctant to dive in straight away with heavy painkillers, but if you’re in severe pain do be very clear just how bad it is.

Best wishes

kymmie92 profile image
kymmie92 in reply to StormySeas

I'll bear that in mind, thank You!

Much appreciated

Kim

.

Best I can tell you, kymmie92/ Kim, is exactly what's noted to Annieb24: healthunlocked.com/nras/pos...

.

You've a wonderful 🌷 🌻 🌹 , healing journey ahead. 🛣

Once you're managing well, there's no reason you can't lead a full, 'normal' life. 👍

You won't be stopped from "doing so many things". ☺️

.

You're young. 👱‍♀️

You've time ⏳ on your side (and a supportive fiancé 👱 ).

Please use it wisely. 😌 🙏

.

Work toward learning 🤓 & understanding 🤔 what you can do — overall health-wise — to self-manage overall physical & mental well-being. 👍👍 (The rest will fall into place once you've a firm grasp of that.)

[Think long-term 🗓 🗓 🗓 , big picture 🖼 , birds-eye view 🦅 strategy.]

.

Please take good care, Kim. 🙏 🍀 🌺 🌞

.

kymmie92 profile image
kymmie92 in reply to Kai--

Thank you! ❤

Oh Kim, how I remember the times before I received my diagnosis, I really feel for you because I was only able to walk on the outer edges of my feet, & that blinkin hurt! Well, it seems you're being fast tracked which is good but if it gets too much before your Rheumatology appointment comes through do please ask your GP for alternative pain relief & an anti inflammatory (plus a ppi, stomach protector, omeprazole or the like). The anti inflammatory (or NSAID) should bring any inflammation down which in turn will ease the pain but also try to rest up your feet as often as you can & try either heat or cold, or an Epsom salts bath or foot soak, that can be soothing. Also, remember to stop taking any pain relief & NSAID a couple of days before your Rheumy appointment, my GP recommended this with the ones she prescribed me because the Rheumy needs to see your inflammation & palpate your joints without anything interfering with your symptoms to reach his diagnosis. Obviously this is if indeed you do have anything autoimmune going on because nothing's confirmed until he's completed all his tests.

I really hope you don't join the creaky joints club but if you are about to there are lots of treatments available nowadays, there's no reason given a little patience you shouldn't feel a lot better than you do presently. The meds (DMARDs) don't work immediately unfortunately, they need some time, 12 weeks or so, to reach their potential but you will start to see some improvements within a few weeks of starting them. You may also be given a short course of steroids or a steroid injection to ease things until your meds work though, I was & it really helped.

If you have any questions just ask, we've lots of info between us that we can share. Maybe the NRAS Inflammatory Arthritis Inflammation Pathway would be a good read for you as well nras.org.uk/1-recognising-s..., please though as has already been mentioned do keep to reputable sites, arthtitisresearchuk.org & arthritiscare.org.uk are a couple more. Any sites based elsewhere may have different protocols so at the mo maybe it would best to keep to UK sites.

Take care & again, any questions just ask. 😊

kymmie92 profile image
kymmie92 in reply to nomoreheels

Thank you for your guidance and advice :) Really appreciated. ❤ xx

Im 28 and was diagnosed two years ago, i struggled to accept it but im there now :) if you need someone to chat to send me a message ❤️

kymmie92 profile image
kymmie92 in reply to Yvettebloo

Thank you ❤

Hi kymmie

You have had some excellent advice here and whatever diagnosis you get from your Rheumatologist (which can take quite some time as these inflammatory arthritis issues can take many paths, twists and turns ) there will be someone here to give you the benefit of their experience and some comforting words.

It is a scary time that people much older than you have a hard time dealing with so I am so pleased you have the support of your wonderful fiancé.

You also come across as very intelligent and level headed which will stand you in good stead to cope and live a fully active life ahead.

Whether you are 20 or 50 the first few months leading up to or just after your first appointment is just vile a really testing time both figuratively and literally as you will be poked with needles more than seems humanly possible. A battery of tests.

I'm glad to hear your GP has given you vitamin D, that was one of the first things I was given. I have Sero negative Rheumatoid arthritis.

I imagine and this is just from experience that your Rheumatologist might prescribe you oral steroids which according to your reaction to them might help diagnose your condition.

Though steroids are not a cure and also not ideal for some and have their own problems they are a very useful drug in the early stages.

I would go back to your GP at the earliest opportunity to avoid any more visits to A & E now you are in the urgent care pathway to be seen as soon as possible.

If you were to ask your GP to test for Rheumatoid factor and anti CCP that would give the Rheumatologist a head start.

I take Tramadol too but only if I absolutely must. There really are not any stronger tablets available not ones that anyone would want you to take in all honesty anyway. I don't think oral morphine would be applicable or advisable.

The advice you were given for anti inflammatories and a stomach protector is good advice.

Lastly kymmie is a gentle hug for you and I want you to have complete faith that you will get help. It won't be immediate and you will have a lot to take in. Listen to your doctors carefully and take good care. Please come back and tell us how you are progressing or when you need some TLC.

Mx

kymmie92 profile image
kymmie92 in reply to Mandalou

Thank you.

I have been back to my GP today; I have been prescribed more Tramadol, 1 50mg tablet every four hours along with Naproxen twice a day and Paracetamol every 4 hours. My GP has also signed me off work in the hopes that the tablets take effect and start working for me.

Thank you for the amazing support and advice :) ❤ It is so helpful! And also very great to know that support is out there and there are people who are willing to talk.

It's the start of a new road ahead for me and my family but we will get through it with support from each other and also you guys on here. Xx

Kymmie did the GP prescribe you a tummy protector like Omnaprezole?

It might be an idea if not to phone and ask the receptionist to ask the GP if this might be an idea.

Naproxen twice a day can be harsh on the stomach.

Mx

She didn't No, I will ring in the morning and ask.

Thank you

You may also like...