About me. (New here)

As5567

Ok so I thought I'd come here to feel less alone.

When I was around 10 I was diagnosed with Juvenile Arthritis, from what I remember of being a child my condition wasn’t really that much of an impact on my life. I remember a few school trips etc where I would be told I cannot take part in activities and not understanding why but that was about it. I don't have any memories of pain. It wasn’t really until I was about 14/15 that I had my first real flare up where I ended up in the children’s hospital for 5 days for IV Steroid treatment. Between the ages of 14-17/18 I was going through the process of finding the best medication to manage my condition at which none seemed to work (Only steroid tablets seemed to give me some sort of relief over the years). For those 4-5 years I missed almost all of my 2 final years in School and did horribly in my GCSE's (Thanks to a non-supportive school who just didn’t understand my condition). Luckily for my the local college accepted me onto the course I wanted to do despite only having one GCSE and they required 5. 2-3 weeks before I started college I started HUMIRA. This drug at first changed my life, I could walk again, get up in the morning without taking a heap of pain killers, sleep at night etc. After 2 years in college with only a few weeks of flare ups I achieved the grades needed to start university and was at a very happy point in my life being able to achieve something that most people told me would not be possibly to do due to lack of gcse's etc.

My first year at university my health was ok but not great, things began to progressively get worse over the academic year but I managed to keep a 100% attendance record and pass the first year with an overall grade of 93%. This academic year has been a nightmare, I started the term on the 1st of Oct and was in hospital by the 4th of Oct having steroid treatment via IV. This did not help my condition, it just caused me to gain more weight and feel like cr*p. I have been forced to withdraw from my studies as of January due to the fact that I have only attended 3 days out of the possible 90 or so. I am pleased to say that the university its self was very helpful, sending me home lectures via Email in MP3 format and PowerPoint and also lecturers calling me to try and give me some guidance on my work etc. But I could just not cope with the work load and the symptoms of the condition. I will be going back in September to resit the year as a 1st time free of charge which is somewhat of a relief.

My rheumatologist says that I basically have rheumatoid arthritis and ankylosing spondylitis. To date my back, hips, knees, feet, neck, jaw, wrists, and ribs/chest area are all very painful and nothing seems to be working. My doctor doesn’t want to take me off the humira yet as he thinks that think is just a bad flare up. I would like to hear off anyone here who gets server flare ups that can last for months and how you deal with it.

I am also going to be honest here as nobody I know will see this lol, when my condition is like this I do get slightly depressed, I don't want to do anything, I feel embarrassed to go anywhere or let anyone see me (Friends, family, strangers even) People do judge and that is something that I have not learnt to accept and probably never will as I have low confidence etc. I also find that when my condition gets bad it's an effort to do the smallest of things like take a shower, I don’t have the physical or mental energy to do such simple tasks and think that there is something else wrong with me. I have spoken to my doctor about these things and he has offered for me to talk to someone about this but that’s probably never going to happen. I don't feel able opening up to others and find that anonymously online is the only way for me.

Another thing I would like to note: Has anyone else got any of these medical conditions though the condition it’s self or medications.

Osteoporosis
Anaemia
Fatigue

Hopefully I will get to know some of you on this forum and feel better about this condition.

Annon

stickywicket

Hello Annon. It’s lovely to meet and I’m so pleased you decided to take the plunge and post here. Many people find it very hard but, once here, stay with us. We are a supportive lot and knowing that others understand where you’re coming from can make a huge difference.

You sound to have done very well on the coping front, given all you’ve had to overcome to get to uni and through your first year. It’s good that your uni has been so helpful too. All you need to do now is get back on track a bit before September and that’s some way off yet so you've plenty of time.

RA plus AS is a tough call. (Mine’s RA) You don’t do things by halves do you? In answer to your question, though, yes, I’ve had flares that lasted for up to 2-3 months. (In fact I don’t personally regard a flare as a flare if it doesn’t last over a week. To me, anything less is just a sign I’ve been overdoing things.) Such flares have usually ended with a tweak of meds – either changing them, adding something else to the mix or, when I get lucky, a steroid jab to get things started.

Of course you get depressed, Annon. We all do from time to time. Who wouldn’t with what we have to put up with? I’m sure you’re aware that arthritis gets worse when we are stressed. You have much to be stressed about right now and no wonder you are in a vicious circle of flare/depression/stress. Your doc has suggested you could talk to someone about this and it could be a big help. Why do you think it won't happen? Of course you can talk to us any time and we’ll try to help too. And/or you could ring our helpline people for a good chat.

As for the osteoporosis, anaemia and fatigue – anyone anaemic will be fatigued though fatigue is part and parcel of RA. Your regular blood tests would pick up on that, though, so you'd know if you were. I’ve been slightly anaemic twice (My rheumatologist told me RA can cause it and so can the meds we take for the RA :roll: ) and a short course of iron tablets sorted me out. You’d be very unfortunate to have osteoporosis at your age though I guess it’s not out of the question.

I know it’s hard when you’re flaring and depressed but try to eat a healthy diet. Plenty of fresh fruit, veg, oily fish. Go very easy on junk food and sugary stuff.

I hope you do feel less alone for talking to us. Please keep on talking to us and we’ll try to help. Sometimes all we can do is share our own experiences but that, too, makes us feel less alone.

barbara12

Hello Annon
And a warm welcome from me
I am so glad you have joined us, for one you can talk to us , knowing that we understand some of what you are going through, and believe me it will help you enormously ...I remember well when I joined it was like a weight lifted from my shoulders.
Dont be embarrassed about having depression there are quite a few on here with different levels of it , and we are all here to support one another.
there are a few with Osteoporosis and hopefully they will see your post.
I have a little friend that has Juvenile arthritis, so I understand some of what you went through, he has really helped me..I am 63 this year and he is learning me to walk properly ...says I stick my bum out :oops:
You take care and I hope to see more post from you very soon xx

ShulaArcher

Hello and welcome from me too

I felt moved by reading about your life and impressed by your determination. You made a good decision to join us here, where you'll get advice and support by the bucket load if you need it.

The fatigue is inevitable and, as SW said, links with anaemia too. I'd also agree with the need to eat healthily and also generally be kind to yourself. I went on one of the Arthritis Care Challenging Pain courses a few months ago and found that really helpful. My pain is still there but I've got strategies for dealing with it and a stronger sense of positivity.

All for now
Shula

constable

Welcome from me. And may I say, what a gutsy person you are. You will find everything you need here. And some pretty amazing people too. If you ever feel deppressed then have a good rant on here, it will do wonders for you.

As I said, you are gutsy, so keep it up, which I am sure you will. And you will be back at Uni in September. I hope it's not long before they come up with a good combination of meds that work for you.

Shall look forward to seeing you around the forum.

suzygirl

Welcome from me. I think you have done amazingly to achieve what you have. It is normal to get depressed when flaring, you have to allow yourself time to grieve for not having a 'normal' life. Steroids can make you feel low and when you are bloated it is horrid. I understand that feeling.

Try to avoid salt and eat more protein, it helps with the weight gain. When you come off the steroids, you will lose the weight. Just take one day at a time at the moment, be kind to yourself and do things that you enjoy.

I am flaring and a shower is hard work, just washing my hair is really hard work and I have to motivate myself to do it. It hurts and make me feel so fatigued I need to rest. We all understand how much effort 'normal' things take and that other people don't understand this.

I really wish you well, you are doing brilliantly.

frogmorton

Hello there Annon

You are so very welcome on here and I am so sorry you have had/are having such a rough time .

Fatigue and anaemia yes. Osteoporosis no not yet for me.

You have done so very well in your first year at University I am amazed with all you have on.

I am not surprised you are feeling depressed and I must say depression is a familiar story for a lot of us on here.

What l can say is that this is a great place to come fo support and tips....we know how hard it is when others can't 'see' our pain or other affects of the disease. You should immediately feel less alone and if you are liek me bawl your way through all the replies on this thread :oops:

Please do keep applying pressure on your GP for the counselling and have you considered one of A/C's courses?? They can help you to find ways to manage the long-term condition and get you in a better place for October (great University BTW - I have 2 girls going this October).

If you go back to the main A/C pages and look on 'your area'. You can put your name down as well as look into groups in your area where you might be lucky and find other young people in your area. http://www.arthritiscare.org.uk/InyourArea

Finally there is the helpline here which you can ring. I have done and they had to listen to me bawling one time

oh yes that wasn't finally - keep posting

Love and ((()))

Toni xxx

dachshund

Hello Annon.
wellcome to this very helpfull and caring forum the people on here are lovely and they know what they are talking about
because they have arther.so just ask what you want to know.
take care
joan xx

kathe

Hello Annon

off, you are really struggling...I know what you are going true, I have olso juvenial arteritt....It is not easy at all.. You seam strong to me, you have manage to take scholl and thats great!!

Fatigue and anaemia yes. Osteoporosis i dont have... When I started the medication I got it and some more real bad side effect..
I have tried enbrel and cimzia and are now waiting to trie medication whit infusion, dont know what it is called yet. But they are talking about orencia...

Hope that you find all you are lokking four in this forum..I found it real great and the people on here really know what it is all about...

Hope it goes better four you and best wisches
kathe

daffy2

Hello Annon
You made a good decision by joining the forum, and I hope you can see how much help and support you will have from people who know what you are struggling with.The depression will tend to make things more difficult to deal with so take up the offer from the GP, speak to the helpline, or write on here, and remember if things really get on top of you in the wee small hours the Samaritans will listen. As someone who has lived with depression for well over 40 years, I've learned that talking or writing to someone you can't see can really help to break the downward spiral, and make it a bit easier to deal with the rest of life - and heavens you have a lot to deal with.
You have achieved so much already you will get through and achieve even more I'm sure.
BTW do look at the ChitChat forum, I'd be surprised if you don't find something to make you smile. Take care.

toady

Hi, just another person to pitch in & echo how much I identify with the not-wanting-to-see-people bit, I know I'd cope sooo much better with feeling rough if I didn't actually look it. Permanently feel too tired to cope with the effort of washing & dressing up to high standard I'd like but just have to pace things out, turn a blind eye to a bit of sitting about in a best-can-do state & put up with saving energy til I can do more. Does make me miserable & grumpy. I'm sure being less worried about appearances etc is a very good thing if you can manage it but we're only human & I haven't mustered up that level of readjustment, yet. When I feel worse I won't answer the door etc, & just fob a poor unfortunate family member off with doing stuff like that for me & make it up to them with some other non-appearance-based favour.

The fatigue is by far the worst of all my symptoms, & I am anaemic, I do blame the RA for both of those.

Good luck with everything, toady.

LignumVitae

Hi there,

Just wanted to add my welcome to you! A year out from university might really give you a chance to settle things and gain some control, I hope it does. We're all hear to listen and support, I find it much easier to talk on here because I know people here will understand because they have similar problems and feelings about arthritis. It's an isolating thing to deal with sometimes but that's why here is so good, you aren't alone when you come on here!
LV

Numptydumpty

Hello, and welcome from me too.
You certainly have a lot to contend with, but I see you have had some good advice from some very wise forum members.
We are always here to listen and help in any way we can.
Take care of you,
Numpty

As5567

Thank you all for your replies. I will be sticking around and hopefully getting to know you all