Got a call this morning to say my first rhuemi appt is next thursday and instead of feeling happy I burst into tears simply because Im terrified. I dont have the best experience of hospitals after my father died from coronary heart disease and spent most of his life in hopsitals i hate them.
Im just so worried about taking drugs and the long term effects they will have on my body from mood swings to other effects. Reading other peoples blogs is actually scaring me more because some of the pain people go through sounds awful. Yes I do suffer with flare ups but their not that often and dont last long. But the truth is i need a baseline treatment my RA factor is 98 and disease factor is 54 so something needs to be done.
At the moment im on Deflazacort and it sent my moods haywire which isnt helping and I started my period today!
I just feel so lost and scared and just want to scream and cry I dont want to live like this.
On a happier note my cousin is coming from london the weather is amazing 41 degrees and we're going to the beach later so will try and look at the posotives !thanks for listening.
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poppykhanom
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OK Poppy - deep breath!! You're not alone we all know EXACTLY what you're going through. The thought of taking drugs long-term is daunting for anyone but the consequences of not treating RA is far worse. Yes I'm sure you read stories that frighten you but that doesn't mean you will suffer in the same way too. Everyone is different. People react to drugs in different ways. Just because one person may have a bad reaction doesn't mean you will too. You'll also read stories on here of people who have found the same medication has helped them no end and they're leading relatively normal lives.
You will want to scream and cry from time to time - that's perfectly normal. This is a life-altering condition but we are all testament to the fact that we don't have to let it rule our lives any more than we have to.
It sounds like you live somewhere lovely and warm so go and enjoy your day on the beach.
You'll be just fine... xxx
Dear Poppy,
I am so sorry that this rotten RA is causing you so much unhappiness, and fear. I'm afraid hospital letters seem to have the same reaction on even the most steely of us. Try to feel positive, that you have been given a quick appointment, because believe it or not, that is a luxury! Have you got a close friend who can go with you, and who can have a cup of coffe with you before the appointment. In my long experience, rheumy consultants are some of the most caring and considerate. Actually, at one of my recent appointments, in Oxford, a doctor from Spain, sat in on the consultation, and she was absolutely lovely, I ended up talking more to her than my consultant, unfotunately, I didn't find out what hospital she practised at. I have seen many doctors from all over the world, who come to Britain, for experience. Do try to relax a little, and you only have to take what medicines you want, I want to assure you that seeing a doctor can be a very therapeutic experience, also they will look at all your medication a a whole. I wish you so much luck at your first appointment, please let us know how it goes. Love.
One of the hardest things on a site like this I think is the diversity of people and all their different experiences. Some people only want to talk when they are having a particularly bad time, and that what this site for me excels at helping others with real worries when they need it. So it may seem that RA is so bad and people suffer so much at times here but the days we are good are generally the days we dont reach for the keyboard!!! So I think you have to give us all good vibes about your day out please as we have no sun here at all, very dismal.
Hospitals are scary place to a lot of people but you will be amazed at the difference of the Rheumy units. I think i know all the staff now, all the stories about their kids or partners and weight control diets!! I feel at ease and a bit of the Family now! Try not to get too worried, the drugs will help, the doctor will kind and help you with painkillers etc, and u should get your own nurse who you can call when you are worried. It all begins to "take shape" , honest! I'd take a list of questions with you, of all your worries, eg ask about the drugs and if they might cause you problems, I've had loads, only had a problem with one and they sorted it out within minutes. And as Chubby says thank goodness you got an appointment its harder when you are fighting for one!
My Dad also died of coronary attack, it is so hard especially, for me, the suddeness. But hospitals also cure people, do physio, do OT, do surgery to cure people , they are not all doom and gloom , and you can actually get quite a laugh with the staff. So try not to worry, look on the lucky part that there is help for our illness, and you go for it!!! From your numbers you need this help and to start getting some advice on where to go from here. And we are here for you on HU, moaning or not ,I'm still me, and still managing to get along with RA. lots of hugs ( and wear sun cream!!)
Keep blogging
Azxx
Hi Poppy. Welcome!
Allanah makes a really good point - the only reason a lot of us blog regularly is because we are worried about some aspect of the meds or the RA and want support or advice from others who may have been in the same place as us so please don't assume this is how things are for everyone with RA. It sounds like you have it like me and that's quite slow and non-aggressive.
Your rheum factor is certainly a loud positive but you must understand that this is a very complicated disease to diagnose and know how to treat and some people have positive rheumatoid factors and don't have RA where others have negative rheum factors and suffer from severe RA so that in itself is not conclusive. If you are counting the disease activity indicator as being the CRP or ESR (both inflammatory markers) then 50+ is not off the richter scale at all - it's elevated but I've had higher at 62 recently and that's at a time when I was feeling pretty good. My GP says this is only one factor of many and the rheumy agreed and explained that it's not like testing blood pressure or cholesterol - it's much more complex. Consistently high inflammatory markers (and they go into tripple figures with many people) will be taken as a sign that the disease might indeed be active - but it is just one of many significant factors.
I too have just had the odd flare up but am relatively well most of the time. I keep on top of things by walking the dog, exercising daily to keep my muscles good and eating very healthily - plus I take Methotrexate and Hydroxichloraquine. I did have a few weeks of excruciating pain last year and have had two brief episodes like that this year so I too am having to balance the side effects of our medications with the infrequent pain. If it was just a question of trading in the side effects that I'm currently experiencing of Methotrexate with the pain I would choose the pain because at least my brain is clear and I wouldn't have the drowsiness and nausea to contend with. But it's not just that with RA unfortunately. It's the fact that it causes severe damage to our joints that worries me most because I don't want to be in a lot of pain and unable to live my life to the full when I'm older. I have had seven months on methotrexate and been really well on it and not had side effects at all and most of the pain has gone away apart from the odd flare up after I've had to drop a dose. We are very well monitored on these drugs so that's good to remember.
We have all been where you are now (both my parents died suddenly of heart problems too relatively young and recently) but as Poppy and Allanah have said you are actually doing really well to be seen so soon and it's important to keep an open mind to what your consultant advises. No one can make you do anything you don't want to so just take your time and listen hard, ask as many questions as you need to ask and come back here and tell us all what he or she had to say. If you want to read a positive blog then read this one;
Take care, big hug and please try not to panic. Tilda xxxx
Hi Poppy, I'm so glad you've found this site and can talk about how you're feeling. We've all been there and I only got diagnosed myself in May so understand exactly where you're coming from. Try not to be too worried as the drugs really do help a lot. I was in terrible pain before diagnosis and regularly spent time quietly crying to myself because the painkillers didn't help. It's been 8wks now since I started methotrexate and I've not had any nasty side effects or needed to take so much as a paracetamol. I live a full life, exercise, swim, eat well and make the most of every day. I cried when I was first diagnosed as I came to terms with having ra but have never cried since with pain. Things will get better for you and whenever you're worried you can speak to any one of us and get some support. Good luck with your appointment and hope you feel better soon.
Poppy, we all don't get the same problems,and the same hospitals. Remember the drs that treated your father won't be treating you so put that worry to one side. Try have some relaxation before you go to the hospital. They are all not ogres and some of them are very nice. My team are lovely and i can ring my nurse anytime during the day if i have a question.
Hi guys thank you soo much for all your posotive messages and insight I'm in a much happier place as have been lounging at the beach with my cousin the last few days and have had wonderful support from her. She flew back to London today but i'm ok as meeting some friends to watch the football Spain against Italy! My sister is coming to the hospital with me and also I have some more family coming over to Spain this week so the timing is great! I'm going to write everything down and all my concerns for the doctor and I'm sure it will be ok. I decided t hat after I will go straight to the beach to just relax. I am off wor k for two months now for summer holidays and have decided that I will enjoy this time and make sure i relax! thanks again its really reassured me all your messages. Poppy.
I am hoping your appointment goes well dont be scared!, they will start you on some treatment and in a couple of months you should feel a lot better, do tell them how scared and unhappy you are feeling at the appointment and discuss anything in particular that is worrying you x
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