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Date: 12.10.2010
From: katknapp

Subject: can everyone please write an account of what they suffer

I shouldnt be letting off steam on here,but i feel as though no one around me seems to understand what im going through,its not a case of having a little pain in my wrist and popping a nice little pain killer to make things better,i have pain all over my body i can hardly walk for the pain in my back,im so tired and dizzy all the time my life has changed completely i feel so old...and what i would like if no one minds is for anyone to post on here what they suffer what they go through on a daily basis in all the full gorey detail and then im going to show it to people and maybe they will see what its like to live with and maybe others on here can use it to show to their families too,
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Date: 12.10.2010
From: Laura

Subject: Re: can everyone please write an account of what they suffer

Hi Katknapp

Sounds to me like your going through exactly what I did 6 months ago and it's the worst feeling in the world and the pain was unbearable!! People who don't go through what we go through will never understand how we feel which will often make u very frustrated n angry but remember your not on your own... I only joined these forums a few days ago because I was getting fed up of no one seeming to understand how it makes me feel and already I feel miles better having spoken to people on similar situations!!

Do you have ra? X
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Date: 12.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

At the moment im waiting for my second visit to a consultant all i have been told is i have imflamatory arthritis which could be RA,its so frustrating ive been off work for months now,so tired all the time and no one seems to understand and it does make you feel angry but even thats not being understood its just me being "moody"!
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Date: 12.10.2010
From: athena

Subject: Re: can everyone please write an account of what they suffer

hi,thats a great msg and will help a lot of people let off steam and for the non understanding people to read.

i am sick of being called "moody" "lazy" and even "peg leg" or being told "at least you havent got cancer so think yourself lucky" i do everyday but that doesnt stop me hurting limping and being tired all the time.

people who havent got arthritis dont understand how we have to plan everything we do,or that even some days we know we cant even plan cos of the pain,i wake up every morning in pain and you know its going to be there all day,sometimes worse then other days but always there and not just in one joint either but all over.

and thats not even thinking about the tiredness and accepting we got this disease and have to take nasty drugs for the rest of our lives

sorry if this msg is a bit long, it could be longer but thought id better stop now lol x
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Date: 12.10.2010
From: kazzie

Subject: Re: can everyone please write an account of what they suffer

hi thats excatly how i feel have been the hospital today and got ra anyway buts its all over my bloody eyes shoulders neck jaw everything am so fed uppppppppppp just the same as everyone on here
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Date: 12.10.2010
From: sarah

Subject: Re: can everyone please write an account of what they suffer

heyy, i suffer from osteo-arthritis throughout my entire body. i was diagnosed at 16 months old!

I remember even when i was very young roughly 6ish my arthritis was so bad i was methotrexate injection weekly and at primary school, a teacher had reduced me to tears for not being able to take part in P.E!!

few years back i was kicked off my college course due to being 'lazy' and struggling to stay in an upbeat and in a happy mood with my teachers. i tried to explain to them many times how much i suffer and what i suffer with and asked them to appreciate the fact that i even turn up everyday is a big thing for me. But no they wouldn't have it and told me i wasn't 'right' for the course.

people really dont understand unless they have had it them selves. im sick of having to fight everyone to believe me!!!
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Date: 12.10.2010
From: athena

Subject: Re: can everyone please write an account of what they suffer

was also meant to add tell everyone who makes these comments to goggle "the spoon theory" they may read it and still not understand or they might not even bother to read it but maybe one or two will and that could make a difference x
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Date: 12.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Athena write as much as you want,something else im sick of is other people telling my family how they have or know someone with arthritis and they are fine just take a few tablets and they can run for england!
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Date: 12.10.2010
From: athena

Subject: Re: can everyone please write an account of what they suffer

lol yeah ive heard ones similar to that too, i got RA in my feet and got told to go for a good walk and that would sort it out lol yeah i wish, i also hate being told just to forget about it cos im otherwise healthy ! also a very close family member said to me that once ive seen the rheumy i probably wouldnt need painkillers anymore, well if he did have a magic wand i certainly didnt see it lol x
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Date: 12.10.2010
From: John

Subject: Re: can everyone please write an account of what they suffer

Feel a bit of a cheat as things are'nt too bad at the moment but waking up with achy hands and doing finger stretching exercises before getting up, with creaky knees, sometimes unable to straighten up properly straightaway, hobbling to the bathroom. When Arthur first visited me about a year ago, the finger pain just lifting the loo seat was excrutiating, unable to unscrew the milk bottle top let alone unpeel the bottle seal,feet and legs aching, no energy, no interest. Even shed a tear for a cuddle from my long gone Mum and I'm 62 !!!!!!!!
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Date: 12.10.2010
From: caroline

Subject: Re: can everyone please write an account of what they suffer

Oh Thank god I just been diagnosed with seroneg arthiritis. Im physically and mentally tired feel zombified the meds the docs put me on make me feel worse i force myself to work where they say comment on how slow i am i struggle to do what i should do I ache from head to toe I put my parent responsibilities on to my 15 year old daughter coz i struggle to lift my own toddler i see the rhuemmy nurse who just says the tablets will work in 12 to 15 weeks thats no good i need to live my life now before i loose my job or my daughter grows up wish people understood how rubbish i really do feel
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Date: 12.10.2010
From: charlotte

Subject: Re: can everyone please write an account of what they suffer

I have RA disgnosed in March. I am 30

My symptoms started off with general aches and pains, shortness of breath and heart palpitations. I had a tia previous so assumed it was this.

Joints all over became painful and stiff in a symetrical pattern - both hands, hips etc

Tiredness - fell asleep every day by 9pm couldn't get up in the mornings.

Have been on sulfasalazine since march. Now my hips, hands, wrists, feet and kness are the worst

I am a size 20. My family think i just need to lose weight and pop some painkillers and stop moaning. its very annoying. My fiance on the other hand has been fantastic! Looking into getting a hot tub as that releives sympotoms for a good nights sleep (been using a friends)

Currently on shots of steriods which has been a great help - discussing future drugs in December

Its so nice to see i am not alone.
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Date: 13.10.2010
From: cathy

Subject: Re: can everyone please write an account of what they suffer

Hi i am Cathy i am 27 and i have RA and Anklosing spondylitis.
Day to day i wake up in pain, struggle to do things for my son and myself because "you have to carry on as normal"!, cry for a bit because of pain and fatigue then fight sleep all afternoon and go to work be really moody and hate most people.
I agree with every thing you all have said. people are so ignorant sometimes. There is not enough awareness out there about the diseases we all have which is frustrating.
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Date: 13.10.2010
From: AliBaba

Subject: Re: can everyone please write an account of what they suffer

I Googled 'The Spoon Theory' and have immediately emailed the link to my sister - she has a heart problem and some probs with her spine and neck - can't wait to see what she says. I'm glad I joined this forum because no matter how loving my family are, no matter how great my fella is at doing stuff for me and looking after me (and gently telling me to take a rest when I get really grumpy) and however understanding some people are they never quite get it do they? That's ignoring all those that think I'm making a fuss about nothing more than a few aches and pains!
The spoon theory just says it perfectly - thanks for mentioning it. I'm going to print a copy and keep it in my bag - I bet I need to show it to at least one person every week!
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Date: 14.10.2010
From: nutcracker

Subject: Re: can everyone please write an account of what they suffer

hi all,


I have posted my story on my story section but it has not appeared for some reason.


I am 32 years old male and i have been suffering from SS seronegatice sponteathritise (I know the spelling is wrong) for the last16 years. I have morning stefnees, heart paputation, sometimes my feet bones freezes completly and that is really painful.


However, I went through the medication you name it indometacine, indovit, diclofanic, Humira and the last one I am on is Enbrel injection pin. What I want to know is this


I have read that the enbrel and humira causes cancer and weaken the ammuine system even more than before, is that right? since knowing that I have stopped my injections and i am awaiting for my appointment with my speciallist in order to reconfirm with him whether or not I should continue with it. It would be also very helpful if you could tell me what the most affective natural treatment accourding to your experience?


Also what the medication with the least side affects? I heard there is no drugs out or under research has anyone heard of it? I hope to hear from you soon.


The Nutcracker
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Date: 15.10.2010
From: Rose

Subject: Re: can everyone please write an account of what they suffer

WOW!!! What a great msg. And so very very true. I relate to everyone. Like John I cried for a cuddle and I am 63!!! I have just read "The Spoon Theory" and it just says it all. I think I might buy it and put it on my wall. I have Inflammatory Bowel Disease and thought that I couldnt get any worse till I got so sick I had to fight for my life and ended up in ER and losing 90% of my bowel and was given a permanent ileostomy bag. How hard it was to manage at the beginning and how hard it was to come to terms with it all but at least I was alive and thankful and thought well it wont get worse. HOW WRONG was I? Not a few years later the pains started again and I thought what now. I couldnt get out of bed my joints were red and swollen and I couldnt walk. Much testing later and I was diagnosed with RA. That really makes it difficult to attend to the "Bag" that I have to change and look after each day. When my hands and fingers wont work because of swelling and pain - just like all of us here - somehow I had to find the courage and ability to do it anyway.My feet and ankles so swollen red and agonising I cried with every dragging step. Then it moved on and up to knees hips and elbows. And then on top of that I was told by one "friend" that I was feeling sorry for myself. Really!! I was lazy and if I did more/walked more and complained less (Didnt think I was actually saying anything at the time) I would get better. I have been told so many times I dont look sick so how can I be its now become a joke and I want to yell at them to try my DAY for a while. They just dont get it at all but worse still they dont try to get it really they only want to tell you what you are/are not doing. How can I possibly be that fatigued why do I fall asleep so often and wake so much with pain each night when "You dont look like there is anything wrong with you" Take an aspirin they say that's all you need. This I might add all still being said despite my trying to tell and explain the ongoing problems of living with chronic illness and pain. I could understand if I did not try to explain but it gets a bit much when still they dont listen or understand. So yes I agree with everyone that it is easy to not like people much most days. And I give thanks each day to all the wonderful people out there on this forum who do understand and let me moan and complain when I need to. I am fortunate in that I no longer have young children to care for although I miss my family as one lives with her husband and two children on the other side of the world and the other is 15 hours drive away. My blessing is my friend and carer who makes my day each day and who is the one person who does get it as much as they can. Thank you for reading my moan and thank you so much for starting up this discussion, for it will be a wonderful tool to show all the well-meaning people what it really is like to live with a chronic illness. IT HURTS. IT REALLY REALLY HURTS! AND IT DOESNT EVER TAKE A BREAK OR GO AWAY. Take care everyone and may we all keep supporting each other for many years to come.
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Date: 15.10.2010
From: Lynn B

Subject: Re: can everyone please write an account of what they suffer

Rose sending lots of ((((((((HUGS)))))))) you realy have been through it..... We listen Rose, and we understand. T.C. XX
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Date: 15.10.2010
From: KayJay

Subject: Re: can everyone please write an account of what they suffer

[[[[[[[ Hugs ]]]]]]]]] Rose - just ignore the refuseniks - they don't have your pain so they know not what they are talking about !! ;0) xx
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Date: 16.10.2010
From: colin

Subject: Re: can everyone please write an account of what they suffer

Hi I have Rheumatoid Arthritis and Fibromyalgia and have had diagnosed for 4yrs its not easy to live with I have it everywhere, knees , wrist , hip , neck , back , and everywhere else . the good days have gone now there are just bad days the pain dose dull down but never goās away . my marriage has broken up because of my moods and how rubbish I am to live with . I tried to end it all in May but failed . you would have thought with three lovely kids I would want to stay around but when you canāt do what you want to do like Hugs pick them up play normal games it takes most of being a farther away and when they see me in pain they donāt like it .so I still just donāt want to be here anymore
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Date: 16.10.2010
From: Caroline

Subject: Re: can everyone please write an account of what they suffer

I have a small toddler 16 months infact I do the best I can for her, but still feel guilty. Life is always worth living even if we have to suffer through pain. we wont suffer as much as loosinng a parent Colin Your kids will love you for just being there for them. They need the support of a father figure. You may not see that now but you will soon Life is a roller coaster. I wouldnt be human if i didnt feel your pain but thinking of ending it all wont help your children. My sister had bi-polar and took her life 18 sept 2008 her small son and all those she left behind suffer more than I could ever say. I would give everything to see her 1 more time. I really do feel for you, you need to go back and see your consultant tell him how you really feel there are so many of us who are here to support you so deep breath chin up and lots of (((((((hugs)))))))
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Date: 16.10.2010
From: Lynn B

Subject: Re: can everyone please write an account of what they suffer

Colin, You just cant think like that your kids would be in so much pain you couldnt begin to imagine. It realy is the most painful degrading, frustrating depressing and s....y disease that we have, and thats why we all come on this forum, to give support, to each other to listen and most of all because we understand each others pain.We all do feel for you Colin. I realy think you need someone to talk to face to face you need to see your GP and he will get you the help you so much need, Colin please dont give up you have so much to live for with your children. take care. (((hugs)))
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Date: 16.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

The other day i felt so low i just wanted to crawl into a black hole but then my four year old little girl cuddled up to me and rubbed my wrists to make them better its those little moments that make you carry on bless her
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Date: 16.10.2010
From: Colin

Subject: Re: can everyone please write an account of what they suffer

I understand what everyone is saying and Itās nice to know that i might be at the bottom but there are up's but when i was with my wife and kids 24/7 i could put up with any pain in the world for them but Iām not there i haven't got the hugs kisses the falling asleep in my arms even the fight's the kids have between them self's gave me something to focus on instead of 24hrs of pain all i can do is try no promises thanks every one
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Date: 17.10.2010
From: Rose

Subject: Re: can everyone please write an account of what they suffer

Hi Colin, how much my heart goes out to you as I feel your pain. As you can see from my msg above I deal like all of us with daily struggles and pain. As well, like you I lost my husband. He left because of my pain and went off with my so called "best" friend. I can only say to you to hang in there take each day only one step at a time even though the steps will be agonising you will get there. It is so worth it believe me. I had two beautiful young girls that needed a loving cuddly Mum and all they got was a Mum in constant pain and suffering. Well, many years later I am still here and I have two beautiful girls who between them have three beautiful children - MY Grandchildren. When they all look at me now they dont see someone who is no good they see their Nannie that loves them so very much. Your children will never like to see you in pain Colin but they will never get over losing you because you dont fight for them. Please Please reach out to all of us and go and talk to your doctors till they understand and do this for yourself and your children. Take care I to am sending you (((((((hugs))))))))) and ask that you try. Rose X
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Date: 17.10.2010
From: Rose

Subject: Re: can everyone please write an account of what they suffer

For Lynn B - Thank you so very much for replying to me in this topic. It is wonderful to know that you are all out there and understand. I hope I too can join all you wonderful people and be of help to others when they need it. Thank you so much and many (((hugs))) to you tc Rose X
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Date: 17.10.2010
From: Rose

Subject: Re: can everyone please write an account of what they suffer

To KayJay - Thank you so much for replying to my msg. You are so right the people out their with their socalled good advice really dont no what they are talking about do they. I was so lost till I found this forum and all you great caring people out there. It was then that I began to feel the care of everyone who do know what it is like. Thank you so much and as I said above I hope to be able to help others when they are feeling down. Take Care and (((hugs))) to you Rose X
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Date: 17.10.2010
From: Dorry60

Subject: Re: can everyone please write an account of what they suffer

Hi, I feel the same as yourself. Family and friends, really don't understand. Just as you said they think take a tablet and you are fine (I wish) IM also Hypoglacmic so when I try to go shopping after about 20min I break into a sweat need a drink, and my voice gets so soft no one can hear me.
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Date: 17.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Just to give everyone a laugh...i was told by a well meaning but very misguided family member that i need to learn to "manage my pain" by speaking to a councillor(mis-spelt i know!)...obviously i thanked them after i had got over my hysterical laughter!you gotta love em lol!...im so glad everyone is using this thread to let off steam its so nice to know that im not alone and that there are others who understand,thank you allx
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Date: 17.10.2010
From: Sally

Subject: Re: can everyone please write an account of what they suffer

hi Cathy, have you got enough ammo yet!

I had dinner with a friend last night who said she just assumed I would get treated and get better. She was really shocked at how I was. She hadn't phoned or been to see me for months. Afraid didn't let her off lightly either. People keep asking me out and don't seem to hear me when I say am not sure I will be able to get there! I took a cab last night and it cost me a fortune. Not doing that again, they can come to me!

Anyway Cathy, I am sure you are 'managing your pain' every single day. People don't really understand the amount planning and thought that goes into to normal everyday activities and what one sacrifices to do things to please other people.
xx
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Date: 17.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Sally i didnt realise this thread would be so popular but its brilliant that everyone has had a say on it lol,my well meaning family member was told that i have found a way to "manage"my pain and that is by taking enough pain killers to knock an elephant out lol!

oh something else that annoys me and that is i always wear make-up and people peer at me and say well you look ok apparently to be genuinely ill and in pain you have to be white and drawn at all times...arhhh the hours ive spent putting that mask on lol i should be flattered really!
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Date: 17.10.2010
From: KayJay

Subject: Re: can everyone please write an account of what they suffer

Rose - Hope you are feeling more positive ;0) xx

Dorry60 - I'm Diabetic so I know how you feel ! I always carry a tube of Gluco tabs to get me ' back to normal ' you can buy them from Boots.
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Date: 17.10.2010
From: Sally

Subject: Re: can everyone please write an account of what they suffer

Yeah, know what you mean Kathy. This friend of mine said I didn't sound ill on the phone. Well, there's nothing wrong with my voice! Another friend keeps telling me I look so well. I reply it's the steroids. Honestly, do they think I am making it up or something?
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Date: 19.10.2010
From: Rose

Subject: Re: can everyone please write an account of what they suffer

Hi KayJay, thanks for your msg. Yes I am feeling more positive today thank you so much. I dont feel so alone with the pain today and hope tomorrow its eased more. Hope you are okay too. tc Rose X P.S. I too agree that this is a brill thread. I think if we can share the pain and we all care for each other I am sure the pain eases a little if only for knowing that other people are out there. I hope it keeps going. Rose X
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Date: 19.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Hi Rose it would be good to keep this going i have taken so much strengh from this,knowing im not alone or imagining my illness,oh and i too read the spoon theory it was wonderful im going to print it off and ram it in my bosses face!!!
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Date: 20.10.2010
From: Rose

Subject: Re: can everyone please write an account of what they suffer

Hi Katknapp - good for you having the spoon theory printed off for your boss. Its great wish I had it many years ago when I had to give up work because of these horrible diseases. Like you I have got so much strength and support too from this forum and in particular this thread I hope we all can keep it up. tc (((Hugs))) Rose
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Date: 21.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

well Rose ive printed a couple of copies and hand them out every time someone looks and me and says well you dont look ill i cant promise not to shove it in their faces though lol,everyone has been brilliant on here and i have had more advice and support from here than i have recieved from my own doctor,xx
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Date: 22.10.2010
From: nutcracker

Subject: Re: can everyone please write an account of what they suffer

Hi all,

I am really impressed by the stories and attention given to this particular post. It shows why human beings are defined creatures. I am extremely moved by your story Collin and therefore I decided to write this reply perhaps it can help you in what you are going through.


I decided to be more open and get my other aspects of life involved to generate the power of understanding and acknowledgment to yourself.

At the age 5 I lost my father due to a civil conflict in the country where I originally come from. The most terrible and unimaginable scene was to see my father loosing his life in front of me. A scene that is staying with me for life and many years to come. That particular scene had caused many issues and eventually a mental injury which I am suffering from at the moment.


I come to realise with the help of my psychiatrist that not the scene itself caused the damage but the missing father figure afterwards had caused it. Not being loved enough, not being protected and ultimately not being able to find my way in life normally as I did not have the support of my father where it is extremely important in countries such as the one I come from.

Now I am 32 and I have been fighting this for 27 years, yes 27 years and I am still going on as strong as ever and I will never give up. You name it flash backs, seeing the same image every night during my sleep hours, taking high dosage of anti-depressant drugs to control my OCD, panic attacks, anxiety and mental disorder.

I am married but still can not have children due to the fact I am scared that they will loose me and not have the father figure in their lives. It is unfortunate that some people underestimate the father figure in childrenās lives.


When we are faced with a permanent illness that we can not cure. Thatās where our cause and core beliefs should come a life strongly. Shall we combine the principles and core beliefs we will have an outstanding placebo effect where automatically it will make us feel good and happy they way we are. Sense and simplicity is the key and of course living life as it comes on daily basis.

The joints pain and its affect is so minor in comparison to what I suffer from mentally and I wish from the bottom of my heart I could replace it with a wheelchair. Now I have passed so many thigs in life, traveled abroad, educated myself, got a good and rewarding profession and most importantly I taught myself how to live with what had happened and what I have in hand.


I am really happy to see people putting the world to right on this forum and it is so relaxing to know others are in the same boat. I wish you all better joints lol and maybe one day they can find a cure for it and we all run the marathon hhh.
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Date: 22.10.2010
From: Sally

Subject: Re: can everyone please write an account of what they suffer

Dear Nutcracker,

I'm sorry you lost your father and in such an awful way. However, to say that 'joint pain and its affect (sic) is so minor in comparison and I wish from the bottom of my heart I could replace it with a wheelchair' is insulting to all of us.

How do you know what everyone here suffers? You obviously seriously underestimate the effect of chronic and severe illness can have on people mentally.

I wish you had not lost your father. However, how can you say that one form of suffering is preferable to another? Some people go through terrible things and still have empathy with other's pain. Obviously, you are not one of them.

This is a forum for people with arthritis. We are here to support one another, not be written off as having 'minor' problems by someone with no understanding of our situation.

Go in peace.
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Date: 22.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Bravo Sally well said lol i thought i had strayed on to a different forum when i read the post wasnt sure if it was a wind up!
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Date: 22.10.2010
From: Sally

Subject: Re: can everyone please write an account of what they suffer

Thanks Kat. I thought it was going to stray into evangelical territory at one point. Maybe it is a wind up but I won't have people laughing at our expense.
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Date: 22.10.2010
From: Sally

Subject: Re: can everyone please write an account of what they suffer

......and it is not funny but sick
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Date: 23.10.2010
From: nutcracker

Subject: Re: can everyone please write an account of what they suffer

Well, well, well. I am very surprised. I never underestimated your suffering and never well I was talking about myself if I was given the choice and not about others.

Perhaps I am finding it more painful to suffer with two illness rather than one and both severe. I have the freedom of speech like you do and I am entitled to my opinion about what I see best and ideal for MYSELF. It is none of my business to decide for people how much they suffer as they know it and not me.


Sally, the only difference between us is that I suffer and experiences both illnesses at the very highest level RA and Mental injury but I presume you only experienced RA and not mental injury because if you would. You would not have favored your illness and understood the right facts behind it.
The world is too small these days and I am sure someone will come across my reply who had suffered on the same way. We should be putting the world to rights and not arguing on here.

Therefore, I concluded that this will be my last reply to this matter and not to let it develop any further. It is clear that you have a poor educational background and therefore you are struggling to follow my expressive nature. I wish you all a quick recovery and the best of luck.
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Date: 23.10.2010
From: Sally

Subject: Re: can everyone please write an account of what they suffer

Sticks and stones...... You are wrong on all counts :)
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Date: 23.10.2010
From: Tom H

Subject: Re: can everyone please write an account of what they suffer

What a complete arse!
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Date: 24.10.2010
From: Roger D

Subject: Re: can everyone please write an account of what they suffer

Hi just came across this forum as have been coping with psoriatic arthritis for 8 years. It started with a swollen ankle plus psoriasis on my elbow and scalp. Tried nsaids diclofenac and then arcoxia which controlled the ankle. Psoriasis stayed mild and ankle not a problem for few years. It blew up about 3 years ago, swollen knee, frozen shoulder, lower back pain, psoriasis worse but still mild. But the thing thats really causing a problem is the fatigue and dizziness. I wasn't sure if related although it came on at the same time. It does sound exactly like what others are saying so thanks for your stories. I tried MTX for a year but it made me feel sick and couldn't concentrate at work or if I took it on a saturday I'd be bed ridden for most of the weekend.

Whats dawned on me is that I've completely given up on all social things and hobbies that I used to have. Its pretty much get up go to work come home and rest in front of the TV. l want to do stuff but feel like I've been knocked down by something. It was a surprise when I read that this is common problem for people with this condition. A few friends have mentioned that I always look tired and I think that has put me off having anything to do with people.

Anyway that is my story. Thanks for all the posts I got a lot out of reading them.
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Date: 24.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Hi Roger,Thank you for your post,i know how you feel about giving up on social life i seem to be doing that more lately,i just dont want to talk to people im so tired amd feel grouchy and does anyone else feel as if everything's really loud and noisy? or perhaps thats me lol!
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Date: 24.10.2010
From: athena

Subject: Re: can everyone please write an account of what they suffer

hi

i dont have a social life now either, i used to love going out dancing the night away in high heels, and now id worry about even walking down the road in flat shoes,i wouldnt want to ruin others evening by having to sit down all night and would have to take meds with me as have to take one dose at night,and apart from all the i dont feel like it as im ready for bed by 9pm.

yes katknapp i feel everything is loud and fast around me too and just want to be at home where its quiet,i hope it isnt always like this but the heels are gathering quite a lot of dust on them :)

take care,athena x
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Date: 24.10.2010
From: S

Subject: Re: can everyone please write an account of what they suffer

Hi Roger, yes, I have the same problem and then I feel very isolated as I live on my own. Try and invite people for something that isn't a dinner party (i.e. heaps of shopping, cooking and washing up) but they don't really get 'come round and have something to eat' in a casual way. Always seems to have to be a great long night out (or in) when I'd rather just see people for a couple of hours as I am often in pain and tired. Got taken out last night for dinner left home at 5.45pm and got back at 12.30! Way too long but couldn't leave earlier as dependent on friends for a lift. Any suggestions on how to deal with this very welcome!
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Date: 24.10.2010
From: margaret edwards

Subject: Re: can everyone please write an account of what they suffer

wow!!! and double wow!! have just read through all the comments, and we really must make an effort not to get too personnel, every one knows how they suffer and the degree of pain and disabilty they have, it is personnel to them, and not to be condemmed by others, i find in general listening to others and how they cope very interesting, it helps me to cope with my own pain etc. it costs nothing to be encouraging to others, we all have different levels of what we can cope with, and when we feel enough is enough. to those who encourage i say thank you for listening. m.edwards.
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Date: 24.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Athena im so glad its not just me,im tired of being stuck indoors but once im out i just seem to want to scuttle back home again,ive actually been invited out to an engagment party soon and my well meaning friends dont want to take no for an answer "it will do me good" apparently!but im in the same position as S i will have to rely on a lift home and will feel obliged to stay,i think i will have to resort to either A pretend to be drunk and obnoxious or B blatantly fall asleep either way it will save me from being forced to go out again lol!i also invited a friend round for a chat she turned up at 4 and didnt go till gone 10.30 i was near to tears i didnt want to seem boring so i just sat there trying to be perky and not show i was very very tired,i think in future i am going to be honest and tell people if they are true friends they will try to understand,hope this post isnt to random im afraid thats me lol im just managing to hold onto my sense of humour JUST!
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Date: 24.10.2010
From: athena

Subject: Re: can everyone please write an account of what they suffer

hi katknapp

your post isnt random at all,its good to talk about things like this as its all part of what we go through isnt it,you did make me laugh tho when you said either pretend to be drunk and obnoxious or fall asleep :) but i think your right if they are true friends they will understand that you need to go home and sleep earlier.

i know what you mean about having friends round,without being rude and saying out right "well thanks for visiting but can you go now" without seeming rude,i tend to say to my friends now i will visit them when im feeling upto it and not to tired and then at least i can go when i want.

if we dont laugh about it we will cry but the darker evenings arent going to help as i do tend to hide away in the winter anyway when its dark and cold outside,could you ask one of your friends if they could drop you home earlier that night (engagement party) just in case you feel you cant stay until late? x
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Date: 24.10.2010
From: Rose

Subject: Re: can everyone please write an account of what they suffer

Hi Katknapp good for you again for handing out the posters. Made me smile tho had this bizarre thought about all these people who havent a clue wandering around with paper shoved in their mouth. LOL Great stuff. Sorry Bit off the air today. tc Rose X
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Date: 25.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Athena ive decided not to go to the engagment party now,i know it sounds silly im only 42 but i feel to tired and so much older than everyone else now i dont think i will enjoy myself,this arthritis has kind of made me feel like a million times removed from everything if that makes sense,im feeling very very down today,i went out shopping but felt so tired and ill i just wanted to come home and cry,i was so trembly and clumsy it frightened me :( x
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Date: 25.10.2010
From: athena

Subject: Re: can everyone please write an account of what they suffer

hi katknapp

im so sorry to hear you felt like that today, how are you now? has that happened before when you have been out? is there someone you can talk too about it? i used to suffer from anxiety years ago and used to feel like you did today, i think having arthritis does take our confidence away sometimes,i got asked at work to go to another store for a few days and i said no,i didnt want to go there limping and in pain and my knuckles and fingers are very red and imflammed at the moment and dont like people seeing them.

have you thought about going to your gp or mentioning how you feel to the rheumy nurse? please dont bottle it all up and struggle on,im here most evening if you need to talk.

i do see your point about not going to the engagement party even tho you may have enjoyed yourself if you did go, but worrying about it probably wasnt doing you any good, i know what you mean im only 40 but feel older and sometimes removed too,i feel my friends are going out enjoying themselves but i have to plan things around pain, meds and tiredness.

i thought the meds im on were begining to work over the weekend but woke up this morning with more painful red imflammed joints to add to the ones ive already got.

take care katknapp and speak soon x
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Date: 25.10.2010
From: katknapp

Subject: Re: can everyone please write an account of what they suffer

Hi Athena,its strange at the moment im feeling very tired and tearful,ive tried telling my GP but i felt he didnt believe me,he said of course you feel trembly if your in pain but sometimes im not in pain when it happens,i feel stupid and confused when im out not how i used to be,i dont know if its the arthritis the meds or just mex
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Date: 26.10.2010
From: athena

Subject: Re: can everyone please write an account of what they suffer

hi katknapp

how are you feeling today? was wondering do you only feel trembly when your out or do you get it anywhere anytime of the day? it maybe your meds, im on sulpha and its says they can cause nervousness in some people but it needs looking into as its affecting your life and well being,you have obviously tried talking to your gp with no luck,when do you next see the rheumy nurse? maybe you should mention it then,it must be awful having to deal with this as well as arthritis.
speak soon x
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Date: 26.10.2010
From: Roger D

Subject: Re: can everyone please write an account of what they suffer

Hi katknapp sorry to hear you've been down lately. Thinking of you...hope it will pass as these things often do.
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Date: 26.10.2010
From: sal

Subject: Re: can everyone please write an account of what they suffer

Hi Kat, sorry to hear you are feeling shakey. Athena's got a point, perhaps you could ring your rheumy nurse? Gp's can be very uninformed about arthritis drugs. Mine is very good but she says they are specialist drugs and I should talk to the rheumatology team.

I feel removed from everyone too. My life is such a struggle and then it's hard to go out and pretend everything is ok and manageable. And it's difficult to join in a conversation when you've spent the best part of the week stuck at home on your own as I have! However, if it is just side effects they might be able to adjust your drugs.
Hope you find someone to listen to you.
xx

p.s. Kat, am going back to my original nickname which is BSK, just so you know on future posts.
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Date: 19.11.2010
From: Lin dewhurst

Subject: Re: can everyone please write an account of what they suffer

Hiya! After just reading how u feel on a day to day basis, has made me realise I'm not alone afterall. I've got OA and have learnt to accept the severe pain on a daily basis, but can't understand why I wake up everyday and feel like I've had no sleep, and feel constantly tierd and dizzy, and so forgetfull, I'm always moody with others around me, but dnt get why I feel so ill there isn't a day when I've felt good, I'm on a few meds and I'm convinced the tramadol makes me purspire so bad my hair is wet through and look like I've just jumped out the shower! I've been on tramadol 3 years, can anyone answer why I feel so I'll and is it all normal?
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Date: 20.11.2010
From: AJ

Subject: Re: can everyone please write an account of what they suffer

Hi all, i have just read all the threads in this post and although it is so sad to read how everyone is feeling it also makes me feel that at least I am not alone. Like many of you I now feel i have no social life. Its so hard to explain to people that you are in too much pain, or just too exhausted to go out. And even too tired to have a visit from someone. How can you say sure, come round but dont stay long lol And then there is the sheer exhaustion of trying to look presentable if you are going to see someone, when the days of jumping into a shower are long gone. I sometimes think that climbing Mount Everest would be easier than dragging myself upstairs, followed by the monumental task of showering and drying and dressing.

And whilst i dont want to bang on at people about what RA really involves on a day to day basis i think i may well kill the next person who suggests "have you tried ibuprofen and cod liver oil, they are very good for stiffness" Well silly me, why didnt i think of that? Instead of taking all those other prescription meds i could have popped a cod liver oil tablet!! And my other favourite is "why dont you treat yourself to something new, that will cheer you up?" Where do you start trying to explain? but as they say if you dont laugh you would cry.

Hope you all have a better day than yesterday, whatever yesterday brought for you

Ali
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Date: 24.11.2010
From: Magnus

Subject: Re: can everyone please write an account of what they suffer

sound like me before i did get to know and use Pure Relief
see my profile
http://magnificentmagnus.cieaura.com/contact_ir.html
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Date: 24.11.2010
From: sharron

Subject: Re: can everyone please write an account of what they suffer

hi read all the posts some of them made me laugh,but unless you have somthing broken or bandaged up people really dont understand, but its not only people i went to the doctors and told him i was in pain and the first thing he said was have you tryed ibupropean what sort of idiot does he think i am if over the conter pain killers worked i wouldnt of had to take time off work to come down to see him and certainly wouldnt be paying £7.00 for a perscription when i can pick paracetamol up for 60p. i given up trying to make people at work understand, but saying that my manager called me in the office about amonth ago and said i dont want to worry u but she had a friend who had been ill for just acouple of weeks and she died and then she said she had been taking the drugs for ra its taken that to happen for her to realize that not only do we have to put up with the pain but there is always there the risks of the side effects of taking the drugs as well.
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Date: 26.11.2010
From: Mark

Subject: Re: can everyone please write an account of what they suffer

I have had severe psoriatic arthritis for about 17 years now and I have chronic pain every single day without fail. My fingers and toes are deformed due to bone erosion and excess growth. I have spur growths on most of my joints and also on my spine which cause blinding headaches and have had undergone joint replacement. I am on Enbrel injections twice a week and take enough painkillers and anti-inflammatories to make me rattle when I walk.
I get up everyday, grit my teeth and get on with life. I don't expect or need people to know what pain I go through....that just isn't going to happen. But I do care how I approach life, and I remain determined that it will not beat me. I am not able to work, but I want to. I am an artist by trade and over the past eight years I have exhibited internationally and gained a diploma in graphic arts. I also cycled 300 miles and raised £750 for Arthritis Research.
We don't need to prove to people what we can't do, we need to prove what we can do.
I don't want to rub you guys up the wrong way. I just think that the more you put into life, the more you get out.
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Date: 29.11.2010
From: dolly

Subject: Re: can everyone please write an account of what they suffer

hi everyone. i went to a rehab for treatment awhile back. at the age of 50 at the time (56 right now). part of the treatment was a session for talking and sharing whatever you wanted. this one day the occupational therapist looked at me and said dolly you are our patient that has had RA the longest,so i would like you to answer questions from the other patients. the first question was how do you explain RA to someone that doesnt have. the first thing i would say to a person that didnt have RA is "you dont have a clue and you dont want one" then i would tell them having RA is like having a very serious case of the flu times ten and there is no comfortable fix. my hands are severly deformed and also my feet. i can only type with two fingers and ive had the joints removed from my toes. i went from a size 8 shoe to a size six. you see we with RA DONT HAVE A CHOICE. we damned if we do and damned if we dont. the main thing i can recommend is do take anti inflammatories so your joints dont stay inflamed because that is what causes deformaties and deterioration, believe me i know ive had 30 surgeries to prove it. feel free to ask questions.
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Date: 30.11.2010
From: Lynn B

Subject: Re: can everyone please write an account of what they suffer

As anyone heard from Colin, Colin are you there...
would realy like to hear from you, and know you are alright!!! If you read this message Colin ,,,Just pop in and say hello PLEASE... t.c.
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Date: 02.12.2010
From: dolly

Subject: Re: can everyone please write an account of what they suffer

hi colin. have i got a story for you. i'm hoping you will reply. i am 56 yrs old and have had RA for 41 yrs. i was recently diagnosed with fibromyalgia but the doc is not sure how long i've had fibromyalgia. he figures for many years and the RA was masking it. so believe me when i tell you i know exactly how you feel. i have one child, he's 32 now. when he was about 2 i tried to commit suicide. being in so much pain ALL THE TIME i'm still very glad that i didn't succeed. i've had 30 surgeries. i have teo replaced hips, 1 replaced knee, both wrists have had the joints removed, both feet have had joints removed from my toes. i've had two heart attacks, one lung collapse, and a serious kidney infection which could have killed me because it got into my bloodstream. now i'm going to share something with you that i know is true. i seen a program on tv about people that tried to commit suicide and they did die for a few minutes and were brought to life. this young girl she took a whole bunch of sleeping pills and she did die for a few minutes. when they brought her back she talked about what she saw. she said she seen that big bright light everyone talks about, but when she tried to walk towards it cause she seen her grandmother at the end of that she looked down and that all she saw was rats, lots of them, and snakes and other kind of ugly bugs, so she couldn't get to where her gramma was. every time she took a step forward the light and her gramma got further away and the rats , snakes, and bugs just multiplied. after seeing that program there was a meeting which was after a funeral for someone that committed suicide. at this meeting an elder stood up and told the people that that person that was just buried was stuck in the middle and could not reach that light because of the rats etc. thi elder was a shaman and first nation. you might not believe in any kind of spiritual things but please think about it. suicide is not an answer. please reply and feel free to ask what ever you like. dolly
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Date: 25.12.2010
From: charlotte

Subject: Re: can everyone please write an account of what they suffer

Hi I just reread this thread to give myself a little moral support.

Since my earlier post I have seen rhumy twice. I have now been diagnosed with sero-neg RA. Had a TIA a month back which they say is caused by the RA unflamming my heart.

As stated previously i am a larger lady at a size 20 and 30 years old. After the tia had a massive flare up.So been off work for a month, started back part time last week.

My parents don't seem to want to understand how i am feeling and suffering. My dad even rang me excited when a lady was on breakfast tv saying she had arthritus until she lost 5 stone - so thats it i need to lose wieght! Even when i called to say what rhumy said i got 'what if you lose weight?' but what if i hardly eat and can't walk and still not loose weight!!! I wake most nights hungary but can't bring myself to eat and go back to sleep -- hence sitting here on christmas morning!! I look forward to xmas dinner and i want to enjoy it to the full but i know i can't cos i'll get the stare - what happened to the diet!!

Anyway rant over. Start the methotrexate in addition to sulfasalazine once my period starts (been trying for a baby and need be 100% not pregnant before taking)

I have been given the impression that methotrexate is for long term but a pharmacist friend of mums has said that they are only to be used for 3 months to a year.. did i really misunderstand so much??

one other question if i may .. does anyone's hair hurt? I know that must sound strange but the pain when i touch my hair is unbearable!!Feels like its being pulled from inside at times.

I hope you all enjoy your day today, best wishes x
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Date: 25.12.2010
From: Helena

Subject: Re: can everyone please write an account of what they suffer

I have recently been diagnosed with severe osteoarthritis after 20 years of relentless pain, Ive been put on trazadone, pregablin and ive been on co-codomol for 4 years and im waiting for cortisone injections into the worst affected areas. Im 42 and had a hysterectomy 2 years ago and my condition had deteriorated since then. Main symptoms are relentless pain and stiffness especially at night, gastro probs,overwhelming fatigue, and general flu like symptoms. Ive also suffered from chronic insomnia. Many many times I have felt suicidal,I have been treated for depression in the past and unfortunately most of my physical pain has been put down to that. I have fought so hard for a proper diagnosis. Im furious its taken this long considering my Dad and sister have arthritis and my bro has RA.Im a single working mother and have had to give up work this christmas as Im too ill.My son has at times been the only thing that has stopped me from killing myself. last night in particular I really felt like I couldnt go on,I have become so isolated and unable to be with other people. What always gives me great comfort is keeping things in the day, if that's not possible then keeping it in the hour! Also reading other peoples experiences helps me know I am not alone when sometimes I feel like the loneliest person in the world. So thats why I have joined this site. Thank you for all sharing your stories.
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Date: 26.12.2010
From: vicki

Subject: Re: can everyone please write an account of what they suffer

Hi my name is Vicky I have been diagnosed with RA for 5 months now, It first started with my wrist and knees. The pain and the lumps in my wrists was unbearable I could hardly walk from the non movement in my knees. I suffered with panic attacks and ended up in hospital. After having various bloodtests my wrist was misdiagnosed as a possible fracture where the Fracture doctor said no but you may have RA, si I returned to my doctor and asked for a referral to a Rheumatologist where they said I have RA without showing up on the Bloodtest for RA. I was given an injection and two pieces of information on what drugs I would be taking in the future which are MTX and Hydrochloriquinine. I was terrified that I had been diagnosed with this due to never been ill before. The thought of taking these meds with their side effects absolutely wobbled my world due to me being a healthy thai-boxer who trained regularly each week without fail who was independant and never really liked to rely on anybody now I had to rely on people and ask questions to what I was feeling. I went for Time-line therapy to help me deal with what was going on in my life, I thought I could handle the joint pain but when the burning sensations hit me from head to toe and the stabbing pains in my hips and legs were horrific this then settled down and went in to my jaw bone and I suffered crazy head pain and then that went and thing seemed to settle down for a couple of weeks then I had a flair up where my underarms were on fire I spoke to my rheumatologist and she told me that this was not RA linked how scared was I?? betweeen these times I've been to see my GP and asked to have my meds increased one GP said yes the other No, I then had another flair up where I could not even touch my fingernails as my hands were to painfull I then went back to G P who has now raised my MTX to 20mcg andd also she gave me a course of steroids to take needless to say I am now in the process of changing my rheumatologists . My heart goes out to all fellow sufferers who have RA and I am glad I have seen this Forum as I thought I was goiing crazy, also can I mention the strain that it has put on my family and friends due to my erratic behaviour becouse of the symptoms that change from week to week. Are there any groups in the Kent Area that I can meet people with RA or does anyoine live in the Dartford or the surrounding areas that would like to meet up to discuss and chat

Victoria xx
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