help me simply

MargarethaMarpaung

I am a student of 3rd semester. 6 months ago I felt pain all over my body especially when I'm tired or exposed to the sun. I have a fever at the time. At first everyone thought it was just a simple fever or other diseases commonly suffered from exhaustion. Until one day when I eat something that causes allergies in my body and I was taken to the hospital. When taken to the hospital, my condition did not improve, just my allergies are slowly lost its effect. The longer I am getting frequent fever and the temperature even higher. I also feel very hot or very cold all over my body almost every day. It was the week of my exam aawal. I do not live my parents. they are on different islands. I am an Indonesian, an island nation in the south east asia a republic. after two months I finally exhausting examination sentenced seronegative arthritis. confused, that's the first thing that comes to my mind. I've never heard of this disease at all. I tried to find information everywhere but almost no articles in my mother languange is Indonesia. a lot of medical terms that are less I understand about this disease. so, I beg you please help me to better understand this disease in simple language and experience you Thank you in advance for this forum.

stickywicket

Hello Margaretha. It must have been very worrying for you, going through all that and so far away from your family. There are quite a few students on these forums but, although you are only young, I'd suggest that you post any questions you might have on the Living With Arthritis forum as there are far more people who look in there.

Sero-negative arthritis is fairly common. It means that you have one of the auto-immune forms of arthritis but they're not sure which. You might never find out which but it doesn't really matter because the treatments are the same. I have rheumatoid arthritis and the treatments are the same for that, too. What medication are you on?

If you'd like to know more, I suggest you check out some of Arthritis Care's publications. http://www.arthritiscare.org.uk/PublicationsandResources/Listedbysubject You could also PM the Helpline or ask any question you might have on the Helpline forum. If you'd like some moral support come to the Living With Arthritis forum. We're a friendly bunch of people.

MargarethaMarpaung

thank you stickywicket..
you're right that it's very hard for me to face away from it all with the family. Thank you for making me believe that there are still people who support me though perhaps not physically seen by me. I'm taking methylprednisolone and allopurinol. sometimes doctors also provide additional medication for my stomach. but lately I feel my appetite increases. I am very hard to deal with. Do you too?

dreamdaisy

Sticky is away for a while so I'll do my best to help.

Prednisalone increases the appetite and it can be hard not to eat when you feel hungry all the time but you are not feeling genuine hunger, it's the effect of the drug. I have a number of auto-immune complaints, that means that my body reacts to various stimuli by attacking me in different ways: when I was a child it was my skin (I had chronic eczema) then asthma (my lungs would close) now it's my joints with arthritis. The medicines are meant to stop this reaction from happening and it can take time to find the right sort of meds that will wortk for you - I don't know what's available where you are or how treatment will progress.

Is there anyone in your family who has a history of something similar? These things do run in families, my parents weren't affected by the troubles I have although membeers of their families were. This must be hard for you as you are away from your parents, I hope you have some good friends around you to offer support. Come and talk to us, we're always here and will do our best to help, OK? I wish you well. DD

MargarethaMarpaung

thank you for willing to share with me.
so what should I do to control my hunger? Do you have advice? My current weight is above normal and feeling too hungry scare me eventually this will lead to obesity.

and about the history of the family disease, as long as i know, my whole family never know this disease before this time. so far my parents also said there has never been my family who previously suffered from illnesses like me...

dreamdaisy

Hello again, I am so sorry to read that you are the first one to suffer like this, sometimes it does just happen and it's very unfair.

I can only recommend that you tell yourself that your brain is playing tricks on you, keep sipping water and nibbling on raw veg. The consoslation is that once you stop the prednisalone the weight will fall away. You are not having a good time at the moment, are you? We're here, OK? Come and talk to us and we will do our best to support you. Sticky will be away for another three weeks but I'll be about. Take care. DD

MargarethaMarpaung

yes it is, I often think that this is unfair. but talking about feelings. sometimes I am even more sad to see my family especially my mother and sister. sometimes they sadly told me, "sometimes I wish that were injured or sick me. finished, then I know how painful it is, then I can know how to cure it. or at least I will not see you suffer when we can not do nothing. would not even know "the statement often made ​​me feel devastated.

besides drinking water and eating vegetables? I happen to not like vegetables ..
is there any other ideas?

dreamdaisy

Fruit? I don't like fruit but I do like vegetables! Basically nibble anything that is not too calorific - the weight will still increase, though hopefully not as much, because of the pred.

Arthritis affects everyone in our families, our friends too. There are a couple of things which may be worth looking up and reading, one is called The Spoon Theory, the other There's a Gorilla in my House. Both explain the effects of living with a long-term chronic illness and they help those around us to understand what we are dealing with. I wish you well. DD

MargarethaMarpaung

it looks more and more difficult, isn't it? : (
whether it will probably be down again? i mean my body weight?

a few days ago I was suffering from influenza and strep throat. My doctor was afraid that if I had a fever, so he told me to rest in the hospital. Is it so dangerous,huh? I still do not understand why the fever into something very afraid of this disease. my blood pressure also dropped at that time. I do not know, I do not quite understand. so if it causes me to be admitted to hospital every minor diseases such as the flu or cough or etc?

dreamdaisy

I have just been diagnosed today with a chest infection, I have to stop two of my medications because they are immuno-suppressants and my doctor has told me that, despite the antibios I have to take, if there is no improvement in the next 24-48 hours then I have to either go back to see him or go to our local hospital.

Getting an infection can be serious because the meds we have to take reduce our immune systems. This means that when we are ill our bodies do not produce symptoms so we can be very poorly without realising it. I have been dealing with this for some years now and am quite used to monitoring myself (and recognising when I need to take action).

I am feeling very rough so I ask you to forgive me because I have to go back to bed. The weight will go when you stop the steroids, worry not. I will be back when I'm feeling better but that may not be for a little while. I am sorry. Take care, I am thinking of you. DD

MargarethaMarpaung

i'm sorry to hear that dreamdaisy..
I was very scared. Will it all end? still a lot I want to share. to you both. Thank you so much for you. to give me strength. I hope you get back from your care. I also think about you and pray for you.

dreamdaisy

Thank you for thinking about me, that is so kind of you. It is scary and it rarely goes away, so be as prepared as you can to just get on with things. The medication should help to ease the worst of the symptoms but everyone's version of arthritis is unique to them and it can take time to find what helps the best. We'll be here to listen, OK? Sticky won't be back until the middle of April and I won't be around too much until I feel better but I'll keep an eye out for your name. DD

MargarethaMarpaung

I fainted yesterday while in the campus's toilet. it was very embarrassing for me. my parents were telling me to move away from the campus. it really hurts. This is my dream and I as told to stop. I know they feel sick or sad (my family) but my heart is no less than the destruction of them all. I was in the hospital alone. campus is holding midterm exams. I felt very alone, but also did not want to bother the people around me. they have too much help. I felt so **** now. I cried a lot. I know my pain is probably not as bad as the others. but it is very hard for me ...

dreamdaisy

I don't know why you fainted but I am now fearful that you may not be looking after yourself as well as you could. Do you not have friends around you who can give practical assistance? I hope you are feeling better now, please take care. DD

MargarethaMarpaung

well, I guess I've really guard me. But perhaps the demands of my lectures was very high. fatigue, maybe. I studied engineering. so I can not deny that this is not easy. and about friends? I am very reluctant to ask for help from others. I've really bother a lot of people so far ....

by the way, how are you? if it's feeling better now? and what about the sticky? Have better? I pray for you both.

dreamdaisy

Sticky is still on holiday and having a grand time. I'm feeling worse than ever so I'm going back to the doctors to see what they have to say. I doubt there's anything to be done, I'll just have to to wait to get better. I can do that but I want to be sure that there is no other avenue to be explored first.

Yes, we do have to be somewhat self-reliant but people are willing to help and there is no shame in asking for help - you may be able to return the favour to them in the future.

Engineering? Wow, what are your career plans? I'm a teacher, I work as a self-employed tutor to children and adults who struggle with reading and writing. DD

MargarethaMarpaung

where are you guys? I really miss you both and maybe someone :roll:

dreamdaisy

I apologise for not being about lately. My mother died on April 10th and I've been busy with her funeral etc. I am also struggling with my arthritis as a result of all the stress (she lived 120 miles away from me and I've been doing a lot of travelling). DD