Reactive Atheritis :/

Suki

I'm new to this forum. So here is my story, I'm 25 years old and have an 18 month old daughter. Went to my gp with joint pain in my elbows, wrist, knees and ankels. Dr took my bloods to test for rheumatoid arthritis, and asked me to come back. So when I went back for results he said the rheumatoid arthritis came back negative but I have very high inflamation showing up on my blood results. So he said it looks like I've got reactive atheritis due to an infection, never knew this sort atheritis exist. My mother in law suffers from osteoarthritis. He prescribed me with naproxan asked me if I had a spell of feeling unwell a lot but I don't really remember, swear I still have baby brain. He asked me to come back a week later to have the blood tests redone, which I did got the reslts back on Thursday. Dr still thinks I have reactive atheritis but still can't understand why I'm having joint pain due to inflamation. He thinks I now might have gotten an infection during my pregancy (my midwife was hopless), my pregancy wasn't easy high blood pressure, pre eclampsia, possible low placenta which midwife never picked up on. Or I might have got an infection after she was born had to have my waters brokem for me. But he thinks the infection has been in my system for just under 2 years But he is referring me to a rheumatologist to see what they have to say. But I'm in pain every day its so painful to climb stairs and lift my daugher lol she is not light. And I'm in pain through the night which is disrupting my sleep and anti inflammatories arn't helping I've just read up on reactive atheritis and it dosn't tell me much and I don't know what to expect when I go to the rheumatologist? I just feel im too young for all this. I could cry cause I've also read that even though the infection can go away he atheritis could be there for life.

dreamdaisy

Hello Suki, it's lovely to meet you but I am sorry you have had to find us. There is a lot of general ignorance about arthritis so I'm not surprised you're feeling somewhat shocked and bewildered and, if you have reactive arthritis then yes, there is not a great deal of info out there about it.

There are two forms of arthritis, osteo (which is the most common form, around eight million people in the UK have OA and no, they are not all elderly!) and then the auto-immune kinds. These number close to 200 and are caused by the immune system 'misfiring' causing the body to attack itself. Reactive arthritis (for ease of typing I will put RctA) is one of those, it is triggered by an infection, it can ease considerably if the right treatment for the infection is given but may return the next time one has an infection. The auto-immune types can strike at any age (I remember reading a post from a mum whose 18 month old child had been diagnosed with a juvenile form of inflammatory arthritis) - arthritis respects no-one, young or old, rich or poor, male or female. Yup, you've had a rude awakening.

I hope your appointment with the rheumatologist comes through soon because he is the one who may be able to sort things out for you but it is a complex condition. At least your GP is on the ball - you are fortunate with that. I can't comment on the pregnancy and childcare etc. because I am deliberately childless but it sounds as though you had a rough time and yes, if an infection has not been recognised then no wonder that things have been tough. I am shortly beginning my eighteenth year of arthritis and can no longer remember being pain-free (which helps me cope better with it all). I do stairs like a three year old (step up with my better leg, the poorer leg joins it, then either go down backwards like a 'grown-up' or bad leg down, good leg joins it) and have learned to split heavy weights into manageable chunks but you can't do that with your girl. How old is she now? Do you have any help with childcare?

Arthritis doesn't go away but, if it is RctA, then it may well ease if the source of the infection is found and dealt with. It may be worth ringing the Helpline on here (free call, number on every page) to see if they have any information they can send you - they are also very good listeners. I wish you well and please let us know how you get on. DD

salamander

Hi Suki,

Sorry to hear you've been hit with this. My rheumy thought I had reactive arthritis when I first got ill and the only way to really tell, according to him, is that, because it is self limiting, it will go away of it's own accord. A friend of mine had it shortly after giving birth and she suffered for a year but no episodes since. I hope this turns out to be the case for you. It wasn't the case for me, sadly.

Suki

Thank you both for you're reassuring words glad I found this forum because it's people who can understand me and know what I'm going through and know whats its like to be in constant pain. I have a partner who suffers from epilepsy, I'm constantly worrying about him because he could take a fit at any minute. But he isn't very understanding, he just don't understand how much pain i'm in. You would think he would growing up with his mum having osteoarthritis. He works a lot to pay the bills and stuff. My mum helps a a lot again when she is not working she is constantly worried but understanding. My dad hasn't said much since he found out since he found out at the whole thing amd that I'm getting sent to a specilist, he mayb thinking the worst again he works most days and my partner's mum is in a lot of pain and his dad suffers from engina. So in a sticky situation with help. My sister helps a lot when she gets home fromcollege. I used to be at college before I got pregnant and contiued on some of it till complications started then I had to give it up. Was planning on going back but havn't had the energy and I'm sore all the time plus I love spending time with my daughter. She is 18 month just now. She started walking since ahe was 16 months lol have been running after her . The doctors I was with when I was pregant, I changed from there to.my partners surgery after daughter was born. Was furious at everythimg that happend the heatlh visitors at old practice were a waste of space as well my daughter had rly bad ezcma. But they were constantly telling me she was allergic to something. At old practive you could never get appointment, and when you did get 1 got constantly told there was nothing wrong with you. So if I went with this I would have got told it all in my head. After my daughter was born I had to keep goin to get blood taken but was never told why Not like my new practice was surprized to be getting things sorted and seen to. I mean I never though I would get bloods tested and then sent to specialist like I said this would never have happened with my old doctors my new doctors is so understaning. Sorry im rambling a bit lol but dr said specalist appointment could take up to 3 months so just a waiting game now.

19smp59

Hi Suki

I don't know anything about Reactive Arthritis so can't help with that and the other posts have given you some brilliant advice.

It must be so difficult coping with this and a young baby. I do hope that you have some help from family and friends. This forum is brilliant for understanding and giving good advice. Hope things start to get easier and that your appointment with the Rheumatologist isn't too long as I'm sure he/she will be able to give you lots of information and advice and start you on the best medication.

Good luck with it all.

Suzanne x

Suki

Thanks Suzanne yeah hoping the appointment won't be long. Get a lot of help from family which I'm thankfull for x

hileena111

Hi Suki
Sorry I don't know much about re active arthritis ....I've got Osteoarthritis
I just wanted to say welcome to the forums
You'll find that no matter how supportive your partner/family are that they don't understand......they haven't got the pain abnd all that goes with it. :? So that's why we let off steam to each other
You've already got some good advice from people that know about that kind of arthritis.
You are lucky with your GP now......a lot of us weren't as lucky....I kept getting told there was nothing wrong with me until I insisted on a referral to the hospital :x
When I saw the consultant he did an X Ray and promptly told me I needed 2 new hips :shock: I'm a lot older than you but if I hadn't stuck to my guns and asked for a referral I would still be getting told there "was nothing wrong" with me. Needless to say I'm not with him now
A couple of tips......write down everything you want to ask your rheumy when you get an appointment.....just bullet points to remind you {if you are anything like me }

Take someone with you if possible......you're so busy asking that it doesn't always sink in what he says...well not everything
If you cant take someone with you.....have you got a mobile with a recording device? If so take that, explain to the rheumy and ask if you can record the conversation...up until now I don't think anyone I've talked to has been refused.

The last one is ask to be copied into all his correspondence about you {to your GP etc}
Just ask the nurse before you see him and if she cant do that she'll tell you who can. Once you're copied in....that's it ...any visit you'll get a copy of all the correspondence.....
If you have to go and see anyone else....ask the same thing.....to get a copy of the letters.
Sorry a bit of a ramble.
Love
Hileena

Suki

Thanks Hileena111 for the advice will deffo keep all this in mind and write down some questions. Cause if I don't il forget don't have that great of memory lol. When I first got my blood results back and got told I had reactive atheritis lol I couldn't remember and was telling people I had osteoarthritis oops x

dreamdaisy

Your partner is a bloke - 'nuff said. Mine has been living with arthritis for the same length of time as me and is still startled to learn that I am in constant pain. Those who don't live as we do find it very hard to comprehend let alone understand.

There are two items on the internet that you may find of interest: one is called The Spoon Theory and the other There's a Gorilla in my House. Both provide good, clear explanations of the challenges of living with a long-term condition. And don't be afraid to ask any doctor or nurse any questions about what they are doing / prescribing and why. They won't necessarily think to explain because to them it's routine but it isn't routine for you.

Now, your little one; eczema is an allergic (or more correctly an intolerant) response by the skin to a trigger - for some it can also come about as result of stress but I reckon your little girl may be a tad too young for that. My childhood triggers were fruit, all dairy produce, biological washing powder and perfumed soaps. It is an auto-immune condition i.e. the body over-reacting to a trigger and attacking itself. DD

salamander

Hopefully, if you have reactive arthritis, it won't be a long term condition! It's not usually.

crabby85

Suki your post sounds nearly identical to how i feel! My daughter is 15 months old and also not light! I struggle with her alot of the time tbh. Went to the doctor 4 months after she was born with pains in my joints (ankles, knees and hands -and my legs were achey too) had all the blood tests which were negative but the pain worsened. Went back to doctor who thought it might be RA - had more blood tests which were negative for RA but showing high inflammation. They repeated the test a month later and it still showed inflammation. Was referred to the rheumatologist who said he suspects it IS RA (20-30% of people with RA apparantly have negative blood tests) he just examined me and going off my inflammation levels. I have no swelling though which seems to be typical of RA. I had the blood tests repeated again a few weeks ago just before he planned to start me on treatment for RA. - Still inflammation showing but im wary of the treatment plan so having a time out atm. Pain is so bad though. No-one had mentioned reactive arthritis to me i am wondering if i could have this instead of RA and if it would make any difference to the outcome. Hmmm. Hope you let us know how you get on with the rheumatologist. x