Date: 21.09.2010
From: hunnybunny
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Subject: help
I've psoriatic arthritis and I'm in constant pain (right hip,hand,ellbow,shoulder,neck and from my knees down).the worst for me is that I'm constantly tired and the pain in my legs/feet and in my hip is killing me.I also have lower abdomen pain on the right side and I have a really sharp pain where my pubis bone is.I don't enjoy reading or watching tv anymore as it makes my eyes really painful and I find it hard to keep my eyes open. Even 20 meters walking tires me out and I've the feeling that my legs go numb,it feels like if my legs want to give away and that's the moment when I need to sit down.what is happening with me?I can't even lift my own 17 month and 6 month old children without being in pain.what can I do?I don't know how to do my job as a postie when I've to return in 2 month.
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Date: 21.09.2010
From: athena
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Subject: Re: help
hi, have you mentioned this to your gp or rheumy? i get hip groin pain,its absolutely agony and can harldly walk when i get it,get in the bath,turn over in bed,get upstairs etc,i get it mainly in my left side but it travels around and over to the right,do you feel it right at the top of your thigh too? i had this for over 3yrs,it can be agony one day hardly there the next but just come on suddenly,i cant lift or carry anything cos that sets it off,i get a of of clicking and have to stand still for a few minutes until my hip click back in,hope yours isnt bothering you too much tonight x
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Date: 21.09.2010
From: hunnybunny
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Subject: Re: help
My hip makes a clicking noise too and in the moment the pain is really really bad.I put the 2 young ones to bed and that's when the pain started.even a very small walk with my 17 month old son leaves me in pain and totally tired. I don't know how I'll do my job when I've to go back in 2 month time as I'm a delivery postie and the bags weight up to 16 kg and you walk up to 7 miles per day.light duty isn't this easy too as you've lifting,walking etc too.told my rheumy and gp but sometimes I've the feeling they don't take me serious
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Date: 22.09.2010
From: athena
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Subject: Re: help
i think you need to get your hip looked at as soon as possible, have you thought about going to A & E if your rheumy and gp arent taking you seriously? it would be one way to get it x rayed, there is no way you are going to be able to go back to work and carry and walk while you are like this and you dont know what extra damage it will do to your hip,or alternately could you ring your rheumy for an emergency appointment and say you cant stand the pain any longer?
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Date: 22.09.2010
From: hunnybunny
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Subject: Re: help
My rheumy already done xrays but there's nothing to see.today I've really bad pain in my pelvis bone,left leg(knee down towards foot) and in my right hip.
I went twice to a&e and the doctors there said I should ask my gp for morphium but my gp refuses.all I got was diclofenac,naproxen,arcoxia,tramadol,co-codamol etc but nothing which takes my pain away.on Monday I got a steroid injection (my 1st) from the rheumy nurse.
I also have daily headaches which come from my neck and when I mentioned it to one of the gp's she said I've migraine!?!
Sometimes I feel like if I'm crazy cos the gp's don't seem to take me serious.what can I do?I even don't like the rheumy (she is a dragon).can I change my rheumy?oh god,I just want to feel normal again and also be able to do things with my husband and our 4 children.in the moment my poor husband does everything (and doesn't even moan).he needs a medal.
Tomorrow I start methotrexate (7.5mg).how long does it take to improve?
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Date: 22.09.2010
From: athena
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Subject: Re: help
im not sure how long the mtx takes to work, rheumys says allow 12 weeks but i have read on here it can take upto 6 months,im not on anything yet cos still waiting for 1st rheumy appoointment which was meant to be this friday but it was cancelled due to sick dr ! its frustrating when you feel your not being listened too isnt it,and im sure if you speak to your gp to be referred to another rheumy they will,depending on availability in your area but i think it helps to get on with your rheumy, it sounds like you got a good husband helping you which is good,i cant comment on your headaches really but do you disagree that they are really migraines at all? and has anyone mentioned burstitis to you regarding your hip pain? did the xrays show anything?
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Date: 22.09.2010
From: hunnybunny
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Subject: Re: help
The xrays showed nothing except from one fractured rib I had during my 3rd pregnancy (baby was a wee bit heavy,had a cold and was on light duty lifting parcels when it happened).
I don't think I've migraines at all cos the headaches come from my neck and even when I tried maxalt which is for migraine it didn't work.
No,nobody ever mentioned bursitis.
How are you getting on with your pain and day to day life?do you still work?
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Date: 22.09.2010
From: athena
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Subject: Re: help
i think we know our own bodies and know when its a migraine or something else,when is your next rheumy appointment? maybe you could go to the gp and just mention about being referred to another one? its hard to pinpoint pain in the neck shoulder area isnt it but you know its not a headache so needs looking into to. i dont know how i get through the day sometimes,it seems like every joint hurts,ive had pain in my hips for over 3yrs now went to the dr and he said it was endometriosis but i had an early menopause so the hospital ruled that one out and nothing else was done,then 3 months ago my feet started hurting,then my wrist,fingers,elbow,shoulders and now my knuckles and knees,its easier to say what doesnt hurt,the pain is worse some days then others but always there,i never sleep for very long because pain wakes me up,i do work part time as a dispenser in a pharmacy which im finding hard ,they dont let me do any lifting now,am off this week tho, but i dont know how you manage to do your job,as its very physical,would they be understanding if you couldnt go back in 2 months time and took some more time off?
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Date: 22.09.2010
From: hunnybunny
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Subject: Re: help
I can't stay at home.they either put me on light dutys or offer me ill health retirement.can I ask you how old you are?I'm 37 years old but feel more like 86.
I do understand how you feel when you can't sleep right cos the pain wakes you up.I find it hard to fall asleep cos when I go to bed then the pain is at its worst.
Is there anything that takes your pain away?I find a long long (til I'm all wrinkly :-) ) and hot bath good.hope you feel better soon
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Date: 22.09.2010
From: athena
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Subject: Re: help
thank you and hope you do to, would retirement be an option for you? if not then maybe light duties until the mtx works,im concerned that you will have to do all the heavy lifting while in so much pain. im 40 but also feel about 86 too,i worry cos im actually getting used to the pain and dont expect any different now,im so different to i was 6 months ago,i have to think everything through and to work out whether i can do it or not,have you read the "spoon theory" google it and have a look,its sums us up very well i think,i take ibuprofen which does take the edge off and gets me through work most the time, lol at wrinkly but i have hot baths too when i can get in it that is,if not its showers, is 2day your first time on mtx?
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Date: 22.09.2010
From: hunnybunny
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Subject: Re: help
Retirement would be an option for me cos I want to feel like me again and be there for all my children and husband.I hate it that I hardly can do anything with them.I want to enjoy time with them while they're still young and home.and when I feel like my old self again I think I can still go for an other (and easier) job.
No to methotrexate.it will be my 2.time.the first time I stopped cos I got belly cramps,felt sick,far too tired and was bleeding.want to give it another try.
I'm glad that I found this site as I think it helps to talk to someone who is in the same boat like me.
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Date: 23.09.2010
From: athena
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Subject: Re: help
being a mum is a full time job in itself isnt it,my 2 are grown up now but my son still lives at home and does help me cos sometimes its such a struggle to do housework,im back at work monday and dreading it already,i would love a job at home so i dont have to struggle so much getting ready for work in the mornings when im at my worst,its all such a worry isnt it,was awake half the night again with my knees this time,makes a change from my wrists i suppose lol maybe you could have mtx injections if the tablets are upsetting you too much? i have read the side effects arent so bad but meds do affect people differently and maybe in 2 months it will have kicked in and you will be feeling better,i hope so anyway,is there any other kind of work you would like to do? im glad i have found this site too,my family are good but they dont understand but as they havent got i suppose i cant expect them too really.
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Date: 23.09.2010
From: hunnybunny
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Subject: Re: help
My husband understands my pain cos he had an accident last year at work.he slipped on black ice and fell on his shoulder which got badly damaged.he is in pain since last year january and still waiting for an operation.I think the british health system is really bad (I'm german).in germany you just pay from your wages for your health insurance,every 3 month 10 to your gp (or 10 everytime you change your gp or specialist).you can pick whatever doctor you want / need and don't have to wait up to 18 weeks for an appointment after your gp refered you.
Its not nice to hear that you didn't get a good sleep again.you must be really tired.
Why do you not make an experiment with your husband.put some bandages on him (at the same points where you've got your pain) so that his movements are limited and then you could ask him how it feels not to move in the way he wants.also you could tell him that the bandages are symbols for your pain.perhaps he understands you then better.the problem really is that people only sympathise with people who have a broken leg,arm,headaches etc but not with someone who has an "old people illness" which can hit even a young person.
I'm goingfor a sleep now.didn't sleep good too cos the heavy rain woke me and then id to get up for the kids to get them ready for school.
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Date: 23.09.2010
From: athena
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Subject: Re: help
did you manage to get a good sleep? i hope you did, i can never sleep during the day however tired i am but wish i could, i had insomnia for years but it isnt as bad now as it was then but am a very light sleeper anyway, i will try that on my hub, he does ask all the time if im ok but i do tend to hide it from him a bit i think, to independant lol,but your right people dont understand cos they think only old people get it the system in germany sounds a lot better then here, how long have you lived over here? and it sounds as if your husband is really suffering too,my neighbor has been waiting over 12 months for a diagnosis and 12wks to have a injection put into his back how has your pain been today? im not to bad now but was stiff and in pain this morning but no hip pain at all so far today,well i can feel them but not as bad as they have been but can suddenly just start huring, is your like that?
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Date: 23.09.2010
From: hunnybunny
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Subject: Re: help
No,I didn't get a sleep cos all our neighbours are getting new bathrooms and kitchen.unfortunately I'm a light sleeper too.I even wake up during the night if there's a spider in our room.sounds weird but true.I come after my mum.basically we're both such light sleepers that we could hear flees coughing :-)
In the moment I'm not in much pain but my left leg feels some how numb and sore.wonky feeling.
I'm in scotland since july 2007.its my second time.lived here before for 3 years.but this time its forever.
Are you from uk?I think your name is unusual.sounds nice but I never heard it before.
Did you ever tried sleeping tabletts to get at least one decent sleep?I tried it but it didn't help. the tablett tasted really digusting and after I took it I still sat for 4 hours up in bed.about every 3 - 4 weeks I'm so tired,that I just klonk out and manage to sleep up to 6 hours.even with the kids making noises.I probably wouldn't wake up if a bomb would explode in the bed.
Took my methotrexate tonight.hope I don't feel sick or get more pain or bleeding again (which I got the last time I triedthis stuff).
Oh,don't hide your pain in front of your husband cos if he doesn't really know how you feel he can't help you or cheer you up.
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Date: 24.09.2010
From: athena
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Subject: Re: help
hi, hope you had a better sleep then me last night? i slept for about 4hrs then my wrists woke me up,why do the nights and mornings have to be worse cos i think if we could get a good sleep if would help us get through the day, how are you feeling today? my name is unusal,im named after the greek goddess of justice,its pronounced afeena but a lot of people say it like "at hena" lol, i am from the uk,i grew up in cornwall but live in birmingham now,do you miss your country or are you settled here? have you got family here? ive got none in birmingham but try and see them as often as i can how are you feeling after your mtx? ive tried sleeping pills years ago but they didnt seem to work for some reason,i should of benn going for my 1st rheumy appointment today but as it was cancelled i will have to wait patiently for another one to come through the door.
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Date: 24.09.2010
From: hunnybunny
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Subject: Re: help
I slept good for a change.but I'm already tired now.
Thank god I didn't get the sickness feeling and rest from the mtx last night.
I'm settled.I've no family here.they're all in germany but I get regular visits from them.even my grandparents (80 and 86 years old) came once.my grandparents would like to come this year again.oh,and I got my great cousin (30yrs) over here.she lives in wales.I'm in scotland.I don't really miss much except the hot summers,bbq and open air swimming pools.ok and the grey bread and some meat/sausages.but that's all.
Sorry to hear that you didn't get much sleep and that you're in so much pain again.can you not phone that place up which coordinates the appointments and ask them for an faster appointment?it can't be that you've to suffer even longer cos they canceled the app for today.ask your gp for the phone number or phone the rheumy nurse.
So I'll try to sleep now and hope I'll be successfull :-)
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Date: 24.09.2010
From: athena
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Subject: Re: help
hi glad you slept well and dont feel sick after taking the mtx,what painkillers do you take for the pain? anti inflammatories are out when your on mtx arent they, i know i will be scared to take that if they decide to put me on it, i work in a pharmacy and not even allowed to touch the tablets when im depensing it. i rang the hospital this morning and ive got an appointment next saturday 2nd october at 10.15am which isnt long so feel a bit happier about that now,how often do you have to see your rheumy? i think they are in short supply here because the 3 hospitals i live within range too dont have a rheumatology department. its nice you family come over and see you when they can,including your grandparents,i had a friend who lived in germany for 5yrs and he loved every minute of it,i had german sausages but not sure if they were the english version or real ones but they were lovely,does arthritis run in your family or are you the only one who has got it?
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Date: 24.09.2010
From: hunnybunny
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Subject: Re: help
That's brilliant that you got that appointment so fast.I saw my rheumy (dragon) once in july when diagnosed,twice the rheumy nurse (a nice one) and my 2nd time with the rheumy will be on the 13.12.2010.
I don't know but I hardly ever read the leaflets which come with meds cos they can scare you.I take it this way,either they help and I get on with them or not.
Perhaps you ate real german sausages.lidl sold 1 or 2 weeks ago real currywurst (sausage).
My gran she has arthritis and my aunt she had psoriasis,diabetes,crohns disease and psoriatic arthritis (died 8 yrs ago aged 47,heart just stopped).
At least our children are healthy (and loud :-) )
How do you feel about your work?do you want to struggle on or go for ill health retirement?
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Date: 24.09.2010
From: athena
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Subject: Re: help
are you going to go to you gp and ask to see another rheumy? i think i would if i was happy,im hoping mine is nice when i see him next week,so do we see the rheumy nurse more then the dr? you were diagnosed fast cos some people seem to have to wait a long time dont they,i have psorosis but the dr said my rheumatoid factor shouldnt be high if its PA,oh my god your aunt was young when she died wasnt she, it does seem that autoimmune illnessess run in your family like mine, my mum used to get psorosis really bad and my dad has arthritis along with his twin sister,and his older sister and her daughter all have rheumatoid arthritis since their early 30's i remember where i had the sausages now,we have a german market every christmas in the city centre and i went there,it was the best sausage ive ever had i cant afford to retire,i need to find a full time job next year when my son leaves college but dont know how im going to do that,and the dr said i wont be able to,have you thought anymore about what you are going to do work wise? its good your children are healthy and loud lol,my son does get joint pains sometimes so hoping it isnt anything to worry about,he went to the dr and he said he has plantar fasctiitis in his feet, how old are your children? and do they understand your pain?
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Date: 24.09.2010
From: hunnybunny
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Subject: Re: help
so if your doctor thinks that you wouldn't be fit for a full time job,why don't you apply for dla and other benefits? There should be something.
I have 2 girls (14 years / 6month) and 2 boys (8 years / 17 month).so far I would say they understand it with my pain.sometimes I get from the oldest 2 a massage.god how I love massages.
Hehehe sometimes I get massages from my husband too (after I tortured him).
So how are you in the moment?hope your wrist is giving you some peace just now and hopefully during the night.
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Date: 25.09.2010
From: athena
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Subject: Re: help
how did you sleep last night? i slept better bet my left shoulder is so painful this morning can hardly move it,but wrists arent too bad today,feet are also stiff and painful and burning when i take a step,are your feet bad too? i almost begged for a massage last night but didnt get one,i think my hub like being tortured lol,i will have to change my tactics i think your children seem very understanding which is good and makes your life slightly easier,my son is good never caused any trouble but is 19 and getting a bit selfish,he sees me limping about trying to do housework and doesnt offer to help at all, he even moaned at me yesterday cos i hadnt washed up one cup and one glass that was in the bowl,even tho id done the shopping,hoovering,washing,and mopped all the floors,i saw so angry at him,how are you feeling today?
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Date: 25.09.2010
From: margaret edwards.
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Subject: Re: help
hello hunny bunny, i have ben reading your comments,and i was wondering if you have ever had your inflammation levels checked? believe they are called 'esr'? margaret e.
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