Had enough and just want this all to go away!

magicdragon

Sorry, im new to the forum but i havn't posted before but i've been reading for awhile taking solace that im not alone although i often feel like it.

Well i think i've just reached the end of the line and all of the last few months have bit me on the butt.

I'm 23 and a student and i suffer with psoratic arthritis which for the last year has got a whole lot worse!

Im on sulfasalazine along with a hole bunch of other tablets including painkillers co-codamol 30/500 and newly been put on tramadol for when the pain is really bad which is all the time but i've only taken one cos i hate them they make me feel of my face and im trying to study for a degree so that doesnt really help.

I've got it in my knees and fingers as well as being stiff in a hole load of other places.

Also about a month ago i had to buy a stick cos my knee went about 15 times in one day and i just didnt feel safe at all walking and when i was buying it i was in nearly floods of tears.

I hate all of this! i can't clean my house with out it taking hours, i live on my own and im sick of it! The simplest of thing's is agony!

My finger actually feels broken the painkillers havn't even touched it and i had an emergency appiontment and the rheumy injected my knee and said she would refer me to the occupational therapist and physio.She really seemed to simpertise but she said to stay on the sulfasalazine and see her in three months! i can't wait that long!

I've started swimming with a friend to try and strenghten my knee's cos i can't go on my own but when im in the water i feel totally normal and unbroken! i'm a good swimmer and i dont want to leave the pool!!! And when i cant move or do things i hate asking for help im fearsly inderpendant and very stuborn!

Ive applyed for dla to help but they turned me down and all i want is help so i can get along and get by and i'm waiting for a reconsideration to go through and rang up and the guy said it could take 12 weeks! and finally tonight ive just screamed at the guy i love and said i just want to end it cos i just cant take anymore of this ridiculous amout of pain! i bit his head of and all he was trying to do was to make me feel better! i hate what this pain is making me in to!

Thanks for listening

vonski

Hi Magicdragon

Welcome to the site. Sorry to hear what you are going through. Hopefully things will settle down a bit eventually. Sorry don't know much about PA. Didn't the co-codamol help, if they did they might be better for you than the tramadol if they space you out. Heat or ice packs help some people. Try speaking to your Dr. about the pain clinic, they can do a lot more to ease the pain.

The DLA is a nightmare, are you going to appeal and if you do talk to the CAB. They are very good and deal with these claims a lot.

Good luck and hang on in there. There is always someone on here to listen to you. The young peoples forum is good too, have you looked on that one.

Love
Vonski x

colinone

Hello Magicdragon
Sorry to hear you suffering so much i have PA and RA so i know it can get you down. The constant pain wears you out and can play with your brain. You should phone the Rheumy nurse or secretary and see if you can get your appointment brought forward or ask the rheumy nurse to see you. I suffer bad with side effects of most medication but and i know it sounds mad but 500mg paracetamol capsuls are great it doesent take the pain clear away but does give lots of relief and the capsuls are kinder to your tummy. its worth a go you can only take 8 in 24 hours but if you take a max dose of 2 caps its good but can make you feel a bit drowsey. I keep thinking i'm use to the pain and learnt to cope but some days are so bad you cant even think straight. The thing is you do get through it and you do cope because theres nothing else you can do. Take care and keep your chin up oh and give him a big hug
Colin

breane

Hi Magicdragon,Sorry you are in so much pain at the moment. I have OA and RA so don't really know what your condition is but like you,there are days when I come to the end of my tether because of the pain and most of all,because I can't easily do all the things I used to.I take Sopadol for pain relief but of late it hasn't really helped with the pain and I am waiting to see a rhuemtologist,hoping I will get a bit more help with pain relief.I know it must be difficult for our partners as they don't really understand how bad the pain can be and they must get fed up with hearing us moan all the time.But you can log on here and have a good moan and get support from all the other members and I am sure there will be someone on here that will have some helpful advice regarding your condition.Chin up, Breane.x

angel1

Hello Magicdragon. Your post really touched me. You are so young to be suffering like this, and it doesn`t sound to me like you are getting the help and support that you need for either your physical or emotional needs. You say you are a student. Do you have a personal tutor you can talk to, or someone from Student Health. They could perhaps get you some help more quickly. You really shouldn`t be waiting so long. Perhaps you have family- or a very good friend - who could go with you to your GP, and make sure you get the help you need NOW. In my experience, you sometimes have to make yourself thoroughly unpleasant to get what you need. Much love. Angel.

elnafinn

Hi magicdragon

My heart went out to you too because you are no age at all and seem to be suffering so and not much help and guidance being given to you even if your rheumy is sympathetic. You must not wait 3 months until your next appointment you need another one earlier. Have you a rheumy nurse you can call? We do tend to take it all out on the people closest to us - it will be very difficult for your boyfriend too, to take it all on board. There must be someone in the uni that you can go and talk to about your diagnosis and how it is affecting you at the moment. At least you have the swimming where you can forget all the bad things going on in your life and exercise is good. I can also sympathise with you deciding to buy a walking stick. If it is a fold up one, you can leave it in your bag but be reassured it is there should you need it.

You will probably have to chase up the ot and physio. We should not have to do this but time and time again we have to fight for anything to get done for us. If you do not keep on, it seems you are often forgotten.

I really hope things improve for you very soon,

Luv
Elna

lindalegs

Oh Magicdragon I'm sorry you feel like this at the moment and agree with the sound advice you've had from the others.

I've had RA for the greater part of my life and know exactly what you're going through.

FORGET the housework - if there's only you, you won't be making much of a mess and I can assure you it'll wait till you're having a better spell - which you will.

Let others help you too, I wouldn't swallow my pride when I was younger and accept help, even with a newborn baby and a toddler, but I look back and realise how foolish I was then. While others help you at least can try to rest a little.

....and we always hit out at those we love most - your OH is in a difficult position too because this is also affecting him - he sees you in pain but he can't feel it to know exactly what you're going through.

There's the helpline number at the top of the page and although I've not used them myself I've heard they're wonderful.

Take care and I really hope you feel better very soon.

Luv Legs

ninakang

Hi MagicDragon

I'm sorry you're having such a bad time of it, but I'm glad you've found this site. I've found everyone on here very helpful and easy to "talk" to, even when I haven't got much to say and just want a chat.

As well as all the advice above, I just want to say, keep coming on here and talking to us

Nx

suzster

hi, it is a horrible situation, i to often take things out on my family, it's hard because they don't understand, i am also very independent and find the housework so hard, i have to children and a husband and trying to keep up with everything is impossible! just do what you can, the housework will still be there next week, so don't over do it!
welcome to the forum and everyone is friendly and helpful so post away and remember we all feel the same way but with the support of everyone on here things will seem better soon.
sue

ian_hepp

Hi Magicdragon,

I too have Psoriatic Arthritis and this is also my first post, although I am considerably older than you. I do know exactly how you are feeling. You could be describing me even down to the brain fog and not liking taking certain medications. And yes I have felt the guilt of biting my wife's head off when she is only trying to help. Independent, stubborn, yes, but she got her own back on me by buying me a Mr Grumpy tee shirt, which I think is brill.

Ian.

page35

Hi magicdragon (like the name did you get it from Puff the magicdragon?)
I have RA so dont have any good advice but wanted to say hi and hope everything gets better for you asap.
what are you doing your degree in?
Page

melbland

Hiya, welcome to the site.

I'm 24 years old and was diagnosed with sero-negative inflammatory arthritis at 22. I have a form of inflammatory arthritis, but they are unsure as to what I have yet because my bloods are clear and I do not fit in a "neat box" as far as symptoms are concerned.

I had, until recently, also been studying. I qualified as a legal executive in June 2008. My first 4 years were fine, but when I developed arthur, I had 3 hard years of pain, suffering, extreme fatigue etc etc. I found it very hard to concentrate and did fail one or two exams, but I did keep at it. The hard work does pay.

The people on this site are amazing. They have given me so much kindness and love that it feels like a second home to me. I would not have gotten this far without them. If you ever need to talk to anyone, talk with them.

I find it very hard to deal with pain and limitations, especially at my age. To have to ask a colleague for help to open something is one of the many embarrassments I have to face on a daily basis.

I never take my own advice, but if I were you, I would complain to the rheumy/rheumy nurse and your GP for some further advice/help.

Mel

mrsdalloway

Hi Mag haven't got any advice that the others haven't given already. Although you really need to see your personal tutor at uni and explain everything to them so that they are aware and can possibly help with deadlines. You need someone on side that can shout on your behalf sometimes the pain gets so bad that you physically cannot shout for what you need. Thoughts are with you and remember you are most definitely not alone x

mistywillow

mrsdalloway wrote:

Hi Mag haven't got any advice that the others haven't given already. Although you really need to see your personal tutor at uni and explain everything to them so that they are aware and can possibly help with deadlines. You need someone on side that can shout on your behalf sometimes the pain gets so bad that you physically cannot shout for what you need. Thoughts are with you and remember you are most definitely not alone x

Hi Magicdragon
I havent got any more advice than the others have said, just wanted to say hang on in there. it is awful being in so much pain all the time and not being able to live your life normally. I have RA so I sort of understand what you are going through but I am a lot older. It must be so difficult for you trying to study while all this is happening to your body. Do try and get your appointments brought forward. If you get the pain sorted a bit the rest will seem better. Try expaining to your boyfriend how you feel and that your anger is not aimed at him. We all lash out at our partners from time to time, but I am sure you would be understanding if the situation was reversed.
I really do hope you manage to get something sorted. meanwhile use the site to moan. We all do that too when we feel the need. It just helps knowing that the people here really understand how arthritis affects your every waking (and sleeping hour)
Take care
love Gillx

ktl297

Hi Magicdragon,
I have PA too - I read your post and thought to myself that we are similar ages but realised I am kidding myself as I am 32 (but still 23 in my mind!). I am really sorry things are so tough for you at the moment and I can't really offer much advice because it seems like you're doing everything you can by getting extra Rheum appt's. THe only thing I can think of (if you've not done it already) is to keep a diary of pain and problems you're having - I did it over a few weeks to take to an appt and it really helped me in getting my point across. Also you might try doing a map of your body with all the painful / stiff parts listed/marked. I also did that and included bits they had never asked me about like my tempero-mandibular joint (I think that's the spelling), it's the joint between your jaw and skull.

I use microwavable wheat bags and freezable cold packs to ease pain and stiffness and I am also seeing OT, Physio and also I go privately to see a Chiropractor and a "spinal rehab exercise coach" to learn ways to strengthen (gently) my muscles to protect my joints. I take Humira, methotrexate, etoricoxib (anti-inflammatory) and either co-dydramol or tramadol (which also sends me off my face!) for pain.

I've done a bit of research about PA and if you've got questions please ask me...

Hope you're feeling better soon.
KT

denpen

Hiya Hun
Aw you poor thing you are too young to be suffering and whilst studying.
I have OA so I dont know much about RA, but I have learned a few things from the self help group that I attend, the rheumy nurse was there last month and there are a couple of things that she said, Take paracetamol every 4 hours during the day make sure you take them regularly (upto your maximun dose) as long as you can with your prescribed medication, and use a heat blanket or such like. She was of the opinion that these simple things really help. As others have said keeping a pain diary is a really good idea, and if you need advice in between appointments phone the rheumy nurse and talk to her thats what she is there for.
I do hope things get a little better or you and you get more control over your condition.
Take Care
Denise

helpful

magicdragon wrote:

Sorry, im new to the forum but i havn't posted before but i've been reading for awhile taking solace that im not alone although i often feel like it.

Well i think i've just reached the end of the line and all of the last few months have bit me on the butt.

I'm 23 and a student and i suffer with psoratic arthritis which for the last year has got a whole lot worse!

Im on sulfasalazine along with a hole bunch of other tablets including painkillers co-codamol 30/500 and newly been put on tramadol for when the pain is really bad which is all the time but i've only taken one cos i hate them they make me feel of my face and im trying to study for a degree so that doesnt really help.

I've got it in my knees and fingers as well as being stiff in a hole load of other places.

Also about a month ago i had to buy a stick cos my knee went about 15 times in one day and i just didnt feel safe at all walking and when i was buying it i was in nearly floods of tears.

I hate all of this! i can't clean my house with out it taking hours, i live on my own and im sick of it! The simplest of thing's is agony!

My finger actually feels broken the painkillers havn't even touched it and i had an emergency appiontment and the rheumy injected my knee and said she would refer me to the occupational therapist and physio.She really seemed to simpertise but she said to stay on the sulfasalazine and see her in three months! i can't wait that long!

I've started swimming with a friend to try and strenghten my knee's cos i can't go on my own but when im in the water i feel totally normal and unbroken! i'm a good swimmer and i dont want to leave the pool!!! And when i cant move or do things i hate asking for help im fearsly inderpendant and very stuborn!

Ive applyed for dla to help but they turned me down and all i want is help so i can get along and get by and i'm waiting for a reconsideration to go through and rang up and the guy said it could take 12 weeks! and finally tonight ive just screamed at the guy i love and said i just want to end it cos i just cant take anymore of this ridiculous amout of pain! i bit his head of and all he was trying to do was to make me feel better! i hate what this pain is making me in to!

Thanks for listening

HI Magicdragon,

I can sympathise entirely and you have come to the right place to get sympathy.

I also have PA and one word of advice, if you are in alot of pain dont stand for it - you can always make an appointment with your gp and ask him to put you on steroids at least to get rid of your symptons at the moment and dampen down this flare up. Sulphasalazine is ok but certainly not the best make a fuss with your rheumy and he will change your medication - you have to stand up for yourself, no-one else will!!!! try and get him to change you to enbrel or humira, you are entitled to it. Try writing a letter to the rheumy via the hospital, it very often works to get you an earlier appointment.

Good luck and hope you feel better really soon.

Regards
Abi

woodbon

Hi, Sounds like a really bad time for you. I'm 54 and have OA, but its horrible when you get so down, I do, and I think we take it out on the people we love just because they're there. I know I do with my husband and sister. Things do get better sometimes and you will feel better able to cope. Its just soooo hard. I send you my very best wishes and love and hope things soon look a bit brighter for you. Sue

bluelobster

Dear Magicdragon,

Oh my has your post brought back memories for me. I was 23 when i was diagnosed and went through a whole year of agony before anyone would take me seriously. I went around campus at uni on crutches - god only knows how i got through my finals now. I am now 30 and i work for the NHS (ironic i know). All i can say is, i know we shouldn't have to, but be persistent with the clinicians. I know a year was a long time for me hobbling around, dosed up on codiene and only sulphasalazine but i do believe it would have been alot longer if i hadn't have been on the case every day. I also know whats it's like when the misery takes hold and it grinds you down so much when you can't see an end to it. People do listen, i know you may feel like a hassle to everyone around you but you must talk about it to as many people as possible. It helps no end!

My uni was very sympathetic to me and lecturers even offered to give me lifts etc. hang in there and, even though it doeasn't feel like it now - the relief will come. there is an end to it, you just can't see it yet.

magicdragon

Thank you so much for your replys ! i was so overwhelmed and greatful! i'm so sorry it has taken so long for me to reply but i've been desperately trying to revise for my last few exams i've been so excausted.
Well my boyfriend came down and helped me again as i was so desperate and struggling so much.
I went to my gp i was in tears and said i cant cope, i'm very lucky with my gp he allways trys to help and knows i'm not making it up. He gave me tramadol which i don't like really and i'm only going to use it as a last resort.
I'm still on a high level of codiene and i saw my doctor again and he put me on a on steriod anti-inflamatories which i've finished and have seemed to have help a little.
Also i've been using heat supports on my bad finger that i've found for a £1 for a wrist support and two inserts. I've asked the shop if they can get more as i can't afford the more expensive ones regularly.
Regarding my exams i did my best worked really hard and i think if i havn't passed i'm not far from it and i should do on resits hopefully.
Also on abit of good news i've had an appiontment through for the op therapist, i really hope they can help, i can't carry on struggling.
If I don't hear from the pysio or rheumy in a week I will ring them.
I also rang up DLA about if they had come to a decision now from about 6 weeks they now said it could take up to 12 !!! I need help now! i'm struggling so much both financally and physically and i feel so guilty and bad for claming but i'm trying to better myself i just need help to do it! I don't know how i will cope if they refuse i will appeal but it would just knock me for six.
hope everyone is ok
Thanks and hugs to all!
xxx

joyful164

Hi Magicdragon
I am really sorry you are going through so much with the Psoriatic Arthritis at such an early age. I was really shocked to learn how many young people get Juvenile Arthritis these days. In fact, my gp, some 6 months ago said that there had been an extremely high amount of 'clusters' of arthritish in recents years. Research will hopefully find out why soon.

Anyway, again, I am passing on some things that have helped me to cope with the pain. The sooner you can get an appointment with Occupation Therapy the better. They are so helpful. They give you an assessment to see how mobile your hands are and arms.
They will massage the hands back and front with a massaging thing, and it vibrates!. No titters please. Then they use a Parafin Wax bath for you to put your hands in half a dozen times, cover them up for awhile to get the heat properly into the joints and then when they remove the gloves, your hands feel really good. They also made me splints out fit my arms and hands to strap on at night to sleep in. Sounds funny I know, but it helps keep your hands straight. The support that the splints give you helps take the weight off your arms and hands whilst in bed. My OH really laughs at me, well not too much, when I am getting ready for bed. Heat pads at my shoulders, cushion at my hip and then on come the splints. Sometimes I only use one splint at a time. I have found it fatal to use both at the same time in case you need to get to the loo in a hurry. If you cannot get to see an OT then can I suggest you go on to Amazon and perhaps try and get Champneys Wax Hand Bath. They are about £39 plus postage, but then you can start doing your hands yourself. Just be careful that you follow the instructions . I've got one and it does help. Hand and wrist protections are good. They are called Comfort Cool and you can get them from Able Care.

Regarding your DLA, I was awarded the full amount and some carers allowance, not a lot but some. I filled my form in taking in account how I was on a bad day. You must appeal and I suggest you contact your local Welfare Rights Adviser. They are a big help with things like this and will fight on your behalf.

I hope you have some good friends who can help you and I hope you can press to get your Rheumy appointment brought forward. It is vital you do this. Be a nuicance if necessary. You need to get your life back on track.

:Goodluck

Joyful

woodbon

Hello Magic Drageon,
You are having it rough at the moment, but hopefully the physio, occ therapist and so forth can give you the help to make life easier for you. The occ Therapist should be able to give you some support for your hands, I have them, and they don't cost anything . The physio should give you exercises to suit you and help keep your muscles stronger so they can help support your joints and then they will hurt less. It will all take time and I know how hard waiting is, even at my advanced age (54)! :shock: .

Try not to worry too much about the exam results, you may well have done fine, but if not, resits are a possiblility, if you want to. As for the financial side of things, well I know its hard not to worry, but claim for as much as you can! People often have to appeal, I think its very unfair, I'd take advice if you haven't already, CAB or I think its DIAL will help you with the forms, they know how to put things in the jargon the blessed officials like! They may know of other benifits someone in your place can claim. GO FOR IT and DO NOT feel guilty, its our money, not the Govenments, although no-one seems to have told the MPs that.

Sorry to go on! Lots of love and good luck, Sue

eastmidlandsman52

Hello Magicdragon.

Firstly,welcome to the forum. I'm so sorry to read you're in so much pain and suffering with PA. I don't have PA.I've got OA in many joints and fibromyagia in most other places.

I've learned that housework can wait.If you've having a flareup with the pain,and things around the house don't need doing and can be left for another day,then leave them and conserve your energy for yourself.

I'm hopeful you've made,or got already,an appointment to see either your own GP or a Rheumatologist? If not,may I please urge you to seek one as a matter or urgency?Even though you've just had an appointment.I would strongly recommend you phone her and see if you can get a further urgent appointment. It sounds as though you need another one soonest.

I'm not happy with your application for DLA though.I would ask you to visit the Citizens Advice Bureau as a matter or urgency please with a view to withdrawing the current DLA forms you've submitted, and re-submitting a new set filled in with their help.It is sometimes best that these types of forms are filled in by someone other than yourself.I'm sure you are more than capable of filling them in yourself,but sometimes another pair of eyes and ears can help.I would also ask C.A.B. what other help,assistance and benefits you might be entitled to get.

I take it you have an HC2 Certificate for free prescriptions etc?

In terms of swimming,could the Rheumatologist refer you for several sessions in a hydropool? This is a specially heated swimming pool specifically used for people with various forms of arthritis. I'm wondering if such sessions may have a beneficial help in towards easing the pains? There are usually 6 to 8 sessions each lasting around 15 to 20 minutes. You may find them of benefit.

Can the Students Union help you or put you in contact with fellow sufferers of PA? You may find the companionship of other sufferers of this dreadful condition useful perhaps?

I'm so very hopeful that you will soon begin to feel well again. I'm sending you a big cyberhug! All the very best for the future.

magicdragon wrote:

Sorry, im new to the forum but i havn't posted before but i've been reading for awhile taking solace that im not alone although i often feel like it.

Well i think i've just reached the end of the line and all of the last few months have bit me on the butt.

I'm 23 and a student and i suffer with psoratic arthritis which for the last year has got a whole lot worse!

Im on sulfasalazine along with a hole bunch of other tablets including painkillers co-codamol 30/500 and newly been put on tramadol for when the pain is really bad which is all the time but i've only taken one cos i hate them they make me feel of my face and im trying to study for a degree so that doesnt really help.

I've got it in my knees and fingers as well as being stiff in a hole load of other places.

Also about a month ago i had to buy a stick cos my knee went about 15 times in one day and i just didnt feel safe at all walking and when i was buying it i was in nearly floods of tears.

I hate all of this! i can't clean my house with out it taking hours, i live on my own and im sick of it! The simplest of thing's is agony!

My finger actually feels broken the painkillers havn't even touched it and i had an emergency appiontment and the rheumy injected my knee and said she would refer me to the occupational therapist and physio.She really seemed to simpertise but she said to stay on the sulfasalazine and see her in three months! i can't wait that long!

I've started swimming with a friend to try and strenghten my knee's cos i can't go on my own but when im in the water i feel totally normal and unbroken! i'm a good swimmer and i dont want to leave the pool!!! And when i cant move or do things i hate asking for help im fearsly inderpendant and very stuborn!

Ive applyed for dla to help but they turned me down and all i want is help so i can get along and get by and i'm waiting for a reconsideration to go through and rang up and the guy said it could take 12 weeks! and finally tonight ive just screamed at the guy i love and said i just want to end it cos i just cant take anymore of this ridiculous amout of pain! i bit his head of and all he was trying to do was to make me feel better! i hate what this pain is making me in to!

Thanks for listening