Misunderstood pain

I do feel you, i too suffer but with 2 children under 5 you do have to keep going, it is really hard for others to see your pain because there is nothing visible and obvious to look at, unless a joint actually swells that is, I only have one joint that swells but several which are stiff and painful, connect to that the unsightly symptoms of psoriasis and even acne. I have only today got back from the reumatologist who is almost certain i have this particular condition, he has given me an injection with a steroid in it whilst he awaits blood and tissue testing results, (god i hope it is) because this way there is a treatment,no cure but treatment non the less. i am only 32 and have suffered for many years already and like you say, 80 yr olds over taking you in the street isn't very good at confidence building is it. The only other diagnosis i have for the pain is hypermobility for which there is no treatment and i will just have to get on with it, hmmm!! 2 small kids and 'get on with it' EASY? Not!!! Good luck to all (((HUG)))

Hello misunderstood i know how you feel, i feel exactly the same, as if i should just get on with it & feel as if others think at times im lazy, have seen elderly walk faster,as you say at times body feels 80 yet im 55

Plus nothing realy explained by hospital only its P.A. & on medication to ease progression.

Hi, I understand how you feel sweetheart but onwards and upwards eh! This orrible disease can get you down so much and make you feel so tired all the time as well as being in constant pain. I have had this since I was very young and now 36 - had all finger joints replaced and knuckles, and more ops to come but even when you have these ops you feel that people just think, ahh well wots another op she's use to it - Ha! Ha! And then when you have a good day people can't believe that there wasn't anything wrong with you in the first place. Some peoples ignorance is laughable and when the specialist and others say - I know how u must feel it kills me - yer right you keep reading all those books mateys but it don't make you an expert. HA!

Anyway i'm running on and prob comin across as being a grumpy old thing but honestly I'm not - I just sympathise and I DO REALLY Understand hun.

Keep smiling.

Hi, I know exactly how you feel. I am having a flare up and feel very tired. Because I have been fine for months my family still expect me to carry on as normal. All I want to do is lie down. I have also developed a cough and will need an xray. I am aching all over and feel like I have the flu. Is this the disease or am I just paranoid. Sorry for moaning but feeling sorry for myself

Having been struck down very suddenly with PA in 2006 i am now disabled and my quality of life has changed so much. every joint in my body including my jaw is damaged and I am only 46yrs old but often feel 80, i know how you feel about the pain and restrictions it has on your life, what the drs do not understand is that the damage that has been done to our joints will never get better, we will never improve our quality of life, i was told on a recent visit to the consultant that '' We have finally manged to control the PA'' Great!!! at least it means for the moment i will get no worse, but nobody understands the pain and effort it takes to get through the day, we do it because we have kids and they keep us going. I will be honest with you, if i was on my own and had no kids or family i would be booking a one way ticket to Switzerland to a suicide clinic.

I hope your PA remains under control and all i can say is that your childrens love will be your strength, i know i have no answers for you but i hope it's some comfort to know you are not alone, i understand.

I recognise, and can sympathise with, just about all of the comments made by others here. I was diagnosed with PA 10 years ago at age 50. Have been on sulfazalazine and methotrexate with variable success. Have suffered some multiple joint damage but fortunately still manage to lead a resonably active life.

As well as the obvious pain and discomfort (and the prospect of an uncertain future) it's the fatigue and night fevers which get me down. The fatigue is just life-sapping and the night fever disturbs my sleep and as we all know, at three in the morning the smallest problem can seem huge!

Yes, it is frustating when people say things like `Oh arthritis, everyone gets a touch of that when you older` or `I thought you had a problem - you seem fine today` (You should have seen me yesterday Pal!). I guess that`s why it`s good to read the comments from you folks - onwards and upwards!

I have had PA for 7 years. Eventually I had to give up work and am fed up with people saying I haven't got a disability. Constant pain, tiredness, severe depression etc etc. Sorry to sound a right royal pain but it's people's attitudes that are so wearing. I have this week been told I will be reported for falsely claiming DLA by a person who can and will never understand this condition. Dealing with the disease is bad enough but the discrimination is unbelievable. No wheelchair? No disablity! Has anyone else been through this stuff? Help. I feel very very depressed with it all.

hi i'm new to this site, but have had PA for about 12 -17yrs now(it took a while to diagnose). i first noticed something wrong in 1995 i was working full time and was just sooooooo tired all the time. i was picking up colds left and right, and just put it down to the fact that i was working full time and a mother of two young children too. a year later i had the most awful burning of my hands and feet, then everything thing got worse. i was in so much pain, constantly tired etc. i gave up work to concentrate on getting betting, but i ended up much worse. i had heart and breathing problems, and my mobility was restricted as i got "shin splint"on both legs, they felt like they were going to explode! i went from doctor to doctor to try and find out what was wrong. i eventually found my heart was down to stress and i had surgury on my legs to release the pressure on the shins. that, i thought , was that. until 1998 i went back to work and was doing really well, in 2000 whilst at work my right hand "exploded" it was very painfull and twice the size it should be. i was lucky to have medical health with my employers, so off i went, and found out it was PA. since then i have been on so many different drugs, some worked against the PA but were making me ill in other ways, and some didn't do anything for me. i tried gold injections and ended up with a bowel problem. morphine was tried and i became addicted to it, but now 12 years on i'm on dyhydrocodine, and although its not giving me complete pain relief its helping. my main problems are still coming to terms with the effects of PA , i now use a electric scooter as walking is too much for me, my husband does all the house work, cooking cleaning etc, i get very bord and frustrated.

having shared my story, i hope it helps. and also if there is anyone out there that can give me any idea on what to expect in the future i'd appreciate it, as at the moment i am more or less house bound, i spend alot of time either in or on my bed as that is where i am most comfy. i am very reluctant to increase my pain relief as i don't want to be addicted to anything again. once was more than enough!!

Hi misunderstood, I know exactly how you feel, people thinking you are just being lazy, I was recently diagnosed with PA, I have tried loads of different pain killers and have found that the only thing that works for me is morphine, the doctor advised me that lack of sleep wouldn't help me feel any better nor would the weight I have put on they said taking the morphine would help me sleep but it by no means help me sleep, I really understand the comments made by the guest on 16th of july regarding night fever, my body clock seems to be all over the place I wake up in agony at least three to four times a night, it is good to know that I am not the only person who feels like this, my hands and feet swell and the pain is often unbearable but reading other peoples stories makes it clearer that I am not just being over sensitive to what I have.

They tried me on methotrexate but it really didn't suit me I felt like a walking zombie and if it hadn't been for my parents and my children I would never of been able to cope, I do work but have recently been suffering so bad that I was thinking of giving up my job, I really don't know what to do and what help is available out there if I do give it up can you claim disability living allowance for this kind of disease, My girls are 17,15 and 12 they do so much to help me and it really makes me feel guilty to rely on them but without there support there would be days where I would just feel like giving up especially the day I can barely get out of bed I'm so tired, can anyone advise me what help there is available.

Sorry to rant on its just so nice to know there are people who understand the way I'm feeling, I'm only 37 and don't want to feel like this anymore, I know there is no cure for this and there is help but in the long run I'm not looking forward to having fingers and toes that just don't look normal (thanks for listening ) big hugs to all who suffer from this.

Hi , everyone with" misunderstood pain" wow is it really 2 yrs since i was here? a bit of progress in the treatment of PA, i'm seeing a new rhummy, and over the last few weeks have had bloods done for everything except the kitchen sink, also a full bone density, and am now waiting for a MRI of my spine, these were done as last ones were done in 2004, so update really. i've seen the bone density results. and was told the dark areas were showing the inflammation, of the joints - well lets put it this way, there wasn't much white areas showing!!! the tablets haven't changed much, mainly because i don't want to increase the dosage. dr's wanted me back on morphine, no chance of that!! once bitten twice shy. so i just muddle through as best i can, hubby is a star, he still works full time, looks after the house and cares for me. he deserves a medal. luckly my children are now grown up, daughter has a partner and two beautiful children, and son is manager of a pub. the thing i do miss is not being able to play with my grand-children. its fun watching them though. every day is a new day, it could be good where i can go out for a ride on my disability scooter, and get some much needed fresh air, or i could have a "bed day", which is where i'm in too much pain to do anything. learning to pace myself was really difficult to start with, so i sympathize with all you younger PA sufferers. my advise is -do what you can when you are able, and don't do it when your feeling bad. your health is more important than a cobweb free house.

anyway i think i've waffled on long enough now, so big hugs to you all, now i need a rest, lol take care xx

Hi everyone

I've had PA for 5 years - though as first I thought it was PMR. I feel for everyone who has posted and can empathise with all of you. I was on steroids (PMR??) from 2009 to 2013. Started Leflunomide in April 2013. Can't take naproxyn - tummy ache and itching - so currently taking soluble aspirin, but my hands and feet are painful all the time - and I have bursas on both elbows........

Still trying to work for a living! I have a few friends who understand, and my daughter is amazing - but the rest of my family really don't realise how much pain I'm in all the time.

Good luck everyone - don't let this nasty disease get the better of you!

Hi everyone new to this forum and really interesting to read a the posts and ideas on this PA subject .

I developed psoriasis at 30 after extreme stress and throat infections that resulted in a quinsy ( think that's

How it's spelt) which burst and I assume may have triggered psoriasis ,I don't know that for sure but I have

Read this may be one trigger .after twenty years struggling to live with this skin condition that I felt was

Confidence crushing it appeared of course on my scalp and all of my forehead!! Great !spent best part of 7

Years covering my face with my fringe and being stared at ,I have never had much confidence or self

Esteem so it's been a challenge to cope ,to add to this 3 years ago my legs started to feel like lead weights

And my feet were so painful i couldn't walk far as I work shifts which include nights I put the permanent tiredness down to that ,on my days off didn't wake up till 1 pm also put it down to my age 50

A foot care professional told me to see dr for PA!

I have been on methotrexate for three years also read a lot about how to help my glare ups was vegetarian for 5 years I have given up tomatoes ,peppers and mostly potatoes I will try any thing within reason of course to try and keep mobile as giving up work isn't an option so I try and get lots of rest and avoid stressful situations If possible ,I don't know how long I can sustain this level of mobility , I so understand when you say no one understands so I try and suffer in silence and keep going . I was relived to read this forum and see others who have wrote the things I feel and thought .so to ramble on but I feel if we can find a common link we may find a way of treating this better. Thankyou all

Thanks for posting your story. I was - at long last- diagnosed with psoriatic arthritis this week after many years of joint pain and swelling, my GPs refusing to refer me on because they didn't know what was wrong ( why should they, it's a rare condition) .

anyway, enough moaning , just got to get on with my life!

You are an inspiration to me to hear that you cope with this with 7 children. I also have become self- conscious about going out. People comment, albeit kindly, but it draws unwanted attention. Then the endless " have you tried blue elephant's hoof? ' or whatever. Dear God! 

Anyway, beginning of some changes in my life. I know a bit about psoriatic arthritis as my cousins have it (Duh, doctor!). Think I need to make running the house as simple as I can. Also , this condition is life-limiting so I need to have some fun. Also to grow an extra skin against the people who say "can' t you even work part-time?". 

Sorry about the paranoid rambling, just the repression of several years of pain and disability coming to the surface.

thanks to all on this site for giving me some hope

We're all the same!  I was diagnosed with PA 18 months ago and have been on Methotrexate and Sulfasalazine neither of which agreed with me, I felt like a zombie with terrible brain fog although they managed to halt the PA and my Psoriasis. I am not on ANYTHING now!  I have to wait another 2 months to see my rheumy then I am hoping to go on a biologic. 

Why are none of you on Biologics?  I have failed two DMARDS so I am hoping now I will get on a Biologic, as they are supposed to be great... they have offered me Lefledomine but I was told this was the 'Devil's Drug' and gave you chronic diarrhoea!  

I too get the strange looks when you tell people you're tired or in pain... I didn't know that arthritis made you soooo tired, today I have been lying on the bed not knowing what to do with myself.  

BIG HUGS TO YOU ALL!!!  Keep just putting one foot in front of the other xxxx