Hi!

sillyswede

Hi everyone.

First visit in this area of tinternet so thought I'd say hello!

I'm a 33-ear-old mother of four. Been told I have Reactive Arthritis (had pneumonia over New Year's), after 7 months of joint and tendon pain that just keeps getting worse and worse. Have tried Diklofenac and Naproxen but had to stop both because of the effect on my stomac. Feeling very frustrated and helpless at the moment, and fed up with the pains I'm having; knees, heels and ankles are the worst, but it's there in my hips, fingers and back aswell now...

Have an appointment with a Rheumatologist in 5 weeks time, which feels like a lifetime right now. Is this going to go away? It doesn't feel like it right now. :shock:

Thanks!

Sillyswede

valval

hi welcome wish you did not have to find us but great to have you with us sure when they get meds sorted things will be much better for you hang in there val

sillyswede

Thank you Val. I've had great support from my GP; he's been ver so helpful and understanding and we've agreed to try a different anti-inflammatory med now. What else is there if that doesn't work out? Does reactive arthritis always go away?

elnafinn

Hi SS

Welcome to the forum. I am sorry you are going through a rough time at the moment and being a mum with four children, must be very hard work, I only had two! I am sorry to hear of your diagnosis. Were you prescribed a stomach lining pill like Lanzaprazole to take with the Diclofenac? I had to come off Diclo after taking it for a few years but I did find it helped greatly with inflammation. I have taken Arcoxia for a goodly time now and to date have had no stomach problems with that one.

Perhaps you could ask your gp about that med. I have been prescribed Cocodamol too for pain. You could ask about that one for you too should you wish.

I wish you well with your forthcoming rheumi appointment. Write down any questions you have and take them with you because it is easy to forget what you wanted to ask. I do hope the rheumi can put you on some meds to ease the pain for you.

Let's hope some others on the forum with ReA see your thread and reply. I have Osteo Arthritis.

Look after yourself,

Luv
Elna x

ironic

Hi there,
Welcome to the forum. As others have said go back to the Dr's as you do need help until your appt comes through.
You will start to feel better when you have been given the right medication. But it does take time so pace yourself as much as you can.
Keep a record of your symptoms and how it effects you. This will help when you go for your appt.
Have you tried heat/cold on your hands?
Keep posting and hope to see you around soon.

Lv, Ix

dreamdaisy

Hello to you and welcome to the worst club in the world. Finding the meds that help is so much a matter of trial and error - it is one of the most frustrating things about this whole malarkey. Keep posting tho, tell us what's going on - we're all old hands at this and we may come up with something that the medicos forget - they cannot remember it all. DD

elnafinn

dreamdaisy wrote:

Hello to you and welcome to the worst club in the world. DD

Aw, DD it may be one of the many worst clubs in the world, but AC, this forum and the helpline is the best place to be should you have arthritis of any kind. The support and help here is tremendous.

Hang on in there, SS, keep calling in, things will get better. Others will tell you that. Some peeps get sorted quicker than others. It is trial and error sometimes.

I hope you are having a better day today,

Luv
Elna x

sillyswede

Hiya, and thanks! I just feel frustrated and down with it all at the moment; struggling to see any ups to be honest. Reading online made me think that ReA is self-limiting and goes away after a maximum of a year, but so many seem to keep ongoing symptoms, or recurring ones.

When trying the naproxen recently I took Omeprazole aswell, but it did nothing to help with the stomac issues. The new one I'm going to try has Omeprazole in it, and is a different type of NSAID, so fingers crossed...!

Thanks all for the support; it's nice to hear from people in a similar situation. Don't feel I'm quite taken seriously by some people around me...

dreamdaisy

That is often the case. Arthritis isn't always visible - I'm lucky in that respect 'cos the crutches give the game away! It also varies from day-to-day - yesterday I had a blast, reduced pain for some reason, feeling cheerful and optimistic that things were on the up. Thank God that's all gone now, I'm back on familiar ground. That is the bit that families don't get - how it can change so quickly. Google The Spoon Theory - it explains how one feels in a very clear manner. Talk to us, we know 'cos we've all been there. DD

elnafinn

Hi again SS

We hear that story time and time again on here after being diagnosed with any type of arthritis, not being taken seriously by others. This includes nearest and dearest, wider family, friends, in the workplace, general public. It seems to be difficult for those around us to understand, because you have not got a leg in bandage/plaster, an arm in a sling, a patch over one eye, something blatantly visible to them. That is why this forum is a great place to call in, we do understand on here. We know what it is like. :roll:

ReA can go after a time or get very much better, so I am given to understand but there are no hard and fast rules, unfortunately.

We have all felt like you at the beginningand have our ups and down, highs and lows. It is very understandable. It will get better.

I have my fingers crossed for you, I can go that

Luv
Elna x

elnafinn

Another thought, sometimes for example it may help to use a walking stick and another day you may not need it, people see this and wonder what you are playing at. :roll: All they see is you are using a stick one day and not the next - they cannot understand that arthritis fluctuates. Some days we can hardly get out of bed, another day, is a really good day or not so bad day.

When your meds suit you better, things will look up for you.

Hang on in there, SS, you have found new friends on here.

Luv
Elna x

elnafinn

"Just diagnosed with Reactive Arthritis" thread bumped up for you SS. I hope it helps you a little. Just found another one too and bumped that up for you as well.

Luv
Elna x

dreamdaisy

What a kind person you are, elnafinn. I hope the world is treating you well - ironing much? DD

elnafinn

dreamdaisy wrote:

What a kind person you are, elnafinn. I hope the world is treating you well - ironing much? DD

So are you DD. Let's gently pat each other on the back, aye?

Yep, ironing becons - some in the basket, some on the line. It is a good drying day here today, but no sun.

Hope you are managing ok,

luv
Elna x

sillyswede

You're all so lovely in here... Thank you Elna, just replied to one of them. I come in and out of here and don't always reply straight away, but that's only because I'm having to digest what you're all saying. A part of me is in denial, and the other part is quickly realising that it'll will take a lot, and a while, for me to get to grips with this... :!: x

elnafinn

Hi Again, SS, sorry to keep bombarding you, but it is with the best of intentions.

Should you wish, I know that Fayann (Rainbow77) would not mind you private messaging her. She does look in from time to time, but she is a busy lady since she has felt so much better.

Look after yourself,

Luv
Elna x

elnafinn

Never ending ReA flare thread bumped up for you, SS. I will keep quiet for a while now. The ironing becons

Read them at your leisure. The threads are not going anywhere, just may be pushed down the page a little. You will find them ok.

Luv
Elna x

cthornley

My heart goes out to you, I am a 31yr mother of 1 and I find that exhasting enough.
I'm sorry to hear about the ReA, I don't know much about it but I have RA and have done for over 12 yrs now
I hope they can start to do something for you soon
If you are having problems tolerating those anti inflammitories with your tum then ask for them to try something different
I have big probs with this and currently take one called etodolac...its not one of the ones they immediately try as it costs more money but its supposedly gentler on the stomach
I can't chat now as i'm supposed to be working but if you ever want to chat feel free to message me
Chrissie

clairc

Hi Sillyswede

My name is Clair and I was diagnosed with Reactive Arthritis last year, although I believe I've had a chronic form of it since I was a teenager. My ReA flares when I get strep throat, but 2 months ago it flared after a pelvic infection.

I can understand where you're coming from and how tough it is to cope with the pain and the fluctuations. I'm still fighting to get proper treatment, so far I've only been given strong painkillers during flares but I am hoping to get a referal to a a rheumy who understands the disease soon.

I'm not a medical professional but from what I have read some people can have it once and never get it again, but a minority can get further flares, especially if exposed to another infection.

If you want to chat please feel free to message me.

Clair

Rainbow77

Hi SS

I have Reactive due to food poisoning. I have had it for 4 years now and it has affected lots of my joints. I was off work for 2 and 1/2 years but on the mend now. I had food poisoning undiagnosed for 9 months and so when I was treated, my immune system was totally wrecked and as a consequence have severe Rea. But there is hope!!

Once I was referred to excellent Rheumy department and started Dmards (disease modifying drugs). I have taken a combination of sulphasalazine and hydroxycholquine for nearly 3 years now. My inflammation levels are now very low and I am slowly reducing the amount of medication I take and hope to be drug free in the future. But I am not there yet.

However I have gone back to teaching part time and I am so much better than I was. I still have pain in my joints but I guess it is something we learn to live with to some extent.

I am glad you have a supportive GP that really helps. I did also and that helps. You will have to find the combination of drugs that helps you. Don't suffer in pain though, always go back and ask. When you go and see your Rheumy take a list of your symptoms and pain levels so he/she can get a good picture of how it is affecting you. I think they are treating it more aggressively now as new research shows that this is the way forward and if you have had it for 7 months already it shows that it needs some help to dampen down the immune response.

I hope that helps you a little bit, feel free to private message me if you want any other help for support.

Take care Fayann xxxx

tillytop

Hi Sillyswede (love the name) and welcome to the forum. I have RA, not ReA so not able to advise but I can see that you have already had good advice from the other peeps. In terms of struggling to cope, you are not alone - it is very hard to deal with sometimes but hopefully, by chatting to others who understand, you will feel more able to cope.

I am so pleased that you have such a good GP - that is an absolute boon. Hopefully the new anti-inflamms, and possible some painkillers, will give you some relief until you get to your rheumatology appointment.

Thinking of you.

Love Tilly x

psyart

sillyswede wrote:

You're all so lovely in here... Thank you Elna, just replied to one of them. I come in and out of here and don't always reply straight away, but that's only because I'm having to digest what you're all saying. A part of me is in denial, and the other part is quickly realising that it'll will take a lot, and a while, for me to get to grips with this... :!: x

Hi - I am still tryiing to digest what is happening to me - was diagnosed nearly 4 years ago with PA and in June was told I have fibromyalgia as well :!: . I am still in denial which is silly now but I keep waking up and thinking please not another day of pain so when I dont feel the pain on odd times during the day, i think it must all be in my head :oops: . And then BANG it hits me again somewhere in my body.
But people on here are so supportive that this is where I turn to.Even when I feel its a stupid question i know that someone here will understand and support me.


Take care and keep in touvh.

Louise xxx

speedalong

Hi Sillyswede and welcome,

interesting name!! Is there a story behind it?

I don't have the same form of arthritis as you but if you do a search there have been previous threads on it.

Finding the right meds can be trial and error - sounds like your GP is good though. Some are gentler on the stomach than others - like Elna, I have done well longterm on Arcoxia and now recently the GP has added in a stomach protector too (even though was fine on it for years without ... ) this is in line with current guidelines.

Wishing you all the best with your rheumy appointment, even though it feels awhile away.

Speedy

sillyswede

Thanks again you lovely people...!

The name: I'm Swedish (not turnip lol!) and my partner thinks I can be silly sometimes!

I'm sure something will work out in terms of medication. It just seems to have got a lot worse recently. Appointments Office in my hospital have told me to keep ringing checking if there are any cancellations, and that way I might get seen by the rheumy sooner.

What usually happens on the first visit? Will they take blood tests? X-rays? Don't know what to expect really :?

skezier

Hi Sillyswede,

I bet your not silly! I am sorry your feeling so bad and hope the bumped up post's Elna has found with the advice here helps you. Its a good site this isn't it?

I also have had a constant flare for well over a year, its been held 2x for about 2 weeks in all that time and its not a joke is it? mine isn't reactive its pa but I really hope the hospital will get to see you soon and they help you. Nice to meet you and keep talking to this lot as they are so good at helping you feel better. Cris x

dreamdaisy

Hi sillyswede, it is hard to know what will be done on your first consultation as these things seem to vary so widely between hospitals. The best piece of advice I can give is to keep a record of your arthritis, how it feels, when it's worse, when it's better (yes, rare, I know) what triggers it, how tiredness affects you ('cos I bet you are tired, we all are), things you can manage easily, things that are harder (chores around the house, work, stuff like that) so that when you do see someone you have documentary evidence and info that will help them, gain a good picture of you and how the arthritis affects you. Be prepared for blod test, possibly Xrays too (depending upon what drugs they might want to try, if indeed drugs can be given for reactive A).

Keep in touch, let us know when you have your appointment and the outcome: we are interested because we care (and perhaps a litle bit nosey too!) I wish you well. DD