Hello I am really happy to have found this group

maud48

Hello, I am really happy to have found this group of people who will understand how it is to live with arthritis.
I'm 60 and have recently been diagnosed with OA. My GP diagnosed me with PA as I have had psoriasis since the age of 4 and have badly affected nails. I waited 9 months to see the rheumatologist who saw me for 15 minutes, said I had OA not PA (I had no tests at all) and that he wouldn't need to see me again. My feet are badly bent, my knees bowed, hands bent and so painful I can't write (thank God for computers!), hips, back and shoulders painful but the worse is my neck - it's so bad I find sleeping very difficult and wake up every hour in pain. GP precribes co-codamol which I take at night and says they can do nothing else.
I also have ringing in my ears, nausea and dizziness which I thought might be connected with my neck pain - the GP has refferred me to an ENT specialist so am waiting for that appointment.
It's so true what others say that no-one seems to understand the pain and difficulty we suffer, usually in silence.
I'm also a full-time carer for my 4 year old grandson who has ADHD, learning difficulties and fetal alcohol syndrome. He's an extremely big, strong boy and I find it impossible to manage him physically. This causes problems with my husband as he works long hours and travels abroad with his work and of course is having to cut back on this to help with the child.
This makes me feel very guilty and useless and I feel sure that he, and other people, think I am exaggerating how I feel and being self pitying.
Sorry for such a complaining first post - feeling very tired and down just now as I've been doing a lot and find when I do all my symptoms get worse - that's why I was searching on the internet for reassurance and found this very helpful site,
Maud

dachshund

Hello Maud.
welcome to the site the people on her are very kind and helpfull.
just write about a problem and there will be some one who can help.
joan xx

debatat

Hi Maud, welcome to the site. I am so sorry you are struggling. Your gp does not sound very helpful at all. There are loads of different pain tablets you can try - amitriptyline to help you sleep, tramadol, gabapentin for nerve pain and others. You can also ask to be referred to a pain clinic for help and assessment by an OT for help.

Can you see another gp? You need to sleep, especially with all you have to cope with in the day. Let us know how you get on.

Take care

Deb

bionic

maud48 wrote:

Hello, I am really happy to have found this group of people who will understand how it is to live with arthritis.
I'm 60 and have recently been diagnosed with OA. My GP diagnosed me with PA as I have had psoriasis since the age of 4 and have badly affected nails. I waited 9 months to see the rheumatologist who saw me for 15 minutes, said I had OA not PA (I had no tests at all) and that he wouldn't need to see me again. My feet are badly bent, my knees bowed, hands bent and so painful I can't write (thank God for computers!), hips, back and shoulders painful but the worse is my neck - it's so bad I find sleeping very difficult and wake up every hour in pain. GP precribes co-codamol which I take at night and says they can do nothing else.
I also have ringing in my ears, nausea and dizziness which I thought might be connected with my neck pain - the GP has refferred me to an ENT specialist so am waiting for that appointment.
It's so true what others say that no-one seems to understand the pain and difficulty we suffer, usually in silence.
I'm also a full-time carer for my 4 year old grandson who has ADHD, learning difficulties and fetal alcohol syndrome. He's an extremely big, strong boy and I find it impossible to manage him physically. This causes problems with my husband as he works long hours and travels abroad with his work and of course is having to cut back on this to help with the child.
This makes me feel very guilty and useless and I feel sure that he, and other people, think I am exaggerating how I feel and being self pitying.
Sorry for such a complaining first post - feeling very tired and down just now as I've been doing a lot and find when I do all my symptoms get worse - that's why I was searching on the internet
for reassurance and found this very helpful site,


maud

Hi Welcome to the site it is a very friendly place and you can moan and groan all you like. I understand how you are feeling the medical profession just dont seem to either understand or want to !! So sorry that you are feeling down it is hard enough looking after yourself when you are feeling bad let along having a child to look after aswell. Try and keep your chin up and push the doctors for more answers.

Take care

Rosie X

ninakang

Hi Maud

I'm sorry you're feeling so unwell, I don't have anything else to add other than to listen to the advice given above.

It's good to have a another person on here, they're all good people on this site (a bit mad some of them, but then I fit in well) and if we can't offer solutions, we do at least understand and can offer sympathy.

Nx

skezier

Hi Maud,

Welcome to the site, they are a good lot here. I'm kinda thinking your gp could be doing more for you here. If the Rumo's don't see you them maybe physio or the pain clinic is your next thing to try? It does seem very harsh to just give you co-codamol and leave it at that. As Deb said could you maybe see a different doctor and ask for help?

Hey you are not useless, that’s is a huge challenge for anyone and your doing really well. If they could just give you a bit of help pain wise though.

I have arthritic neck and mine also causes dizziness and a lot of pain, especially trying to sleep. Mine is now under the pain clinic and I also have stemetil to help with the dizziness and cyclosine to help with the sickness so you see your gp could be doing more for you. I hope you can get the help you need and things get easier for you. Take care, Cris

psyart

Hi welcome to this site.

you can moan as much as you like on here - we all understand and feel the same as everyone else on here - if that makes sense!!!!!

anyway - welcome !!

Louise

joanlawson

Hello Maud

Welcome to the site. Like you, I found it by accident when I was looking for information about arthritis. Since then, I have found it a great help and support, so I'm sure you will too.

Your GP sounds a bit lazy if he isn't offering you any more help. I think a pain clinic would be a great help to you, so I would ask about it. You have certainly got your work cut out as carer for a 4 year old. I am 65, and I love children, but I don't think I could manage to look after a child full-time these days. Coping with pain and OA is very tiring at the best of times.

Keep posting! There are some very kind people on here.

Joan

elnafinn

Dear Maud

Welcome to the site and I do hope we can help you in some way. You have so much on your plate at this time. I think you are truly marvellous to be looking after your grandchild so much. Your gp appears to be very unsympathetic and I would try to change your doctor if possible. I am sure you can be prescribed more meds other than coco. He is being most uncaring and unhelpful. Being referred to a pain clinic would be a start. Perhaps you could mention that to him. Unfortunately sometimes we do have to fight for attention from these medics. We have to keep on going back until they see that we need help.

I do hope that you get some respite from looking after your grand child. Is there a group locally that he can attend sometimes to give you a break? We have one fairly near us and it is a haven for children with problems and is very well used. People come from great distances. It is like a fairyland for children. I have been there quite a few times. It is very well supported by local firms, pubs and locals too. Two people in our extended family work there and it is truly rewarding work.

Please do not feel guilty - you are doing more than you should be doing. People do not understand but we do on here so I hope you will have time to join us regularly.

I wish I could do more to help you.

Love
Elna x

sharmaine

Hey Maud
Welcome to the site. Sorry to hear about all your OA pain. I'm surprised you're coping with just co-odamol. You must go back to see your GP if pain is worse. It is rather annoying when the medical profession pay little attention to the deformity of one's limbs. You seem to have your hands full looking after a 4 year old. It would finish me off! My son hasn't had any children yet and I'm hoping and praying both my knees are replaced before they have any. You're right only arthritis sufferers know how uncomfortable and painful this condition can be.

My advice is to go back to your GP - you need to sleep pain free otherwise it's difficult coping with the day in front of you. I sleep reasonably well these days now that my meds are sorted.

You are not complaining. Voicing your problems is healthy and I'm sure others will give you some good advice. It also sounds to me that you should seek help with your grandchild - can the social services not suggest something in the way of childcare? It doesn't sound right that you should be doing so much when you're obviously not well enough to do it.

Take care and if you are still not happy change your GP.

Sharmaine

eckstardeluxe

Hi Maud

Welcome to the site. Don't worry about your first post, mines was all over the place begging for answers and help and I got them. We all have our days when things get on top of us all but sharing them with people who really understand you helps enormously.


Don't worry about being sore and complaining with your grandson, I really understand, I have a 1 and 3 year old and it is very, very hard work. In fact it completely exhausts me, but without them I'd be lying in my bed.


I do echo what the others have said though - go back and see your GP and good luck

Eck

maud48

Thank you everyone for all the lovely replies - they made me cry.
It's so good to know I'm not alone with this and I do intend to see another GP at my practice. You've made me realise that I have to be persistent and not feel like a nuisance in doing so. I found the rheumatologist very abrupt and unhelpful and have spoken to other people who have the same opinion of him, but hopefully a GP may be able to help me.
One of the problems is that I live in a small and remote town in Wales. We have a small hospital with no pain clinic and the rheumatologist and ENT specialist only visit so waiting times to see them are very long, but I will persevere.
Have tried so many times with social services to get help with my grandson, even seen the local MP and got him to write to them, also his GP and paediatrician have written. They've offered no help, financial or otherwise only threatened to take him into care if I can't cope.
We love him very much and he's very happy with us but it is difficult. After bringing up 7 children (some adopted in Africa) we finally thought we had some time to ourselves. He's the child of our youngest adopted daughter.
He's just started full-time school, before that he was going to nursery which we had to dip into our pension savings to pay for.
We've moved around a lot because of my husband's work, living abroad a lot, so don't have anyone nearby who can help. All our family and children live a long way away.
I'm a teacher and artist and was teaching art at the local art school until recently. I find art difficult now because of the arthritis in my hands so have just fitted up a darkroom (thanks to ebay) and am planning to do a lot of work in there, good days allowing.
Thank you again,
Maud

jaspercat

Hi Maud, just wanted to say hello, it sounds as though you have your hands full, I love everyone on this forum, no-one minds if you have a little moan, everyone is just so supportive, they really make a difference to me, looking forward to getting to know you love Jaspercatxx

ritwren

Hello and welcome to the board Maud. Your post really touched a nerve with me. I'm so sorry to hear that you're being treated this way. The Rheumatologist sounds like a right ignorant person. You could either go privately to someone in a bigger city or ask for a 2nd opinion. In either case I agree with everyone else on here that your GP should be doing a lot more to help aleviate your pain.I've found that yu have to really perservere (sorry my spelling is awful) in order to get anything done. Did you get any blood tests done, if not then I'd insist on getting some. Not just for the Rheumatoid factor (which would be negative in PA) but also to check and see if there is any inflammation. I do hope you get some proper answers and relief soon.
You really do sound like you have your hands full with your little Grandchild. I can only imagine how difficult it is. My sister is in a similar position and has to pay for nursery herself now that she is the Child's legal guardian. :roll:
Hopefully you'll find lots of care and support here. Good luck.
rita

karinak

Hello Maud, My thoughts are with you as not only are you in pain but you also look after your dear grandson too and kids that age are very demanding as i well know.
I am new and so happy to have found this site too and they are a really lovely,understanding bunch,so if you feel like you need to clear your head please do as we are here for you and know how you are feeling
Karina x

elnafinn

Dear Maud,

You have been in my thoughts a lot since reading your thread yesterday and I do hope that you are ok today. I admire you very much. You do need to try to find time for you and your health too because that is very important. I do know and have experienced similar, when other things more pressing turn up, we tend to put our own health right at the bottom of the list but this is not always wise. It is obvious you love your grandson very much and you have taken on such a huge task looking after him at your time of life and with your health problems.

I think it would be good for you to change your gp and start to "shout" a little more. You are not a nuisance. That is what gp's are paid for, to help their patients. You are a special and important person to many and you need help to carry on your life as comfortably as possible.

Perhaps your rheumatologist needs addressing too!! Knowledge is power Maud, so ask away on here with any questions and we shall try to answer them and then perhaps you can put your rheumatologist in his place too!!

I do hope you find the time to call in soon, you are a wonderful grandmother.

Luv
Elna x

eckstardeluxe

Me too Maud, I'm with Elna, been thinking about you.

You aren't being bothersome by trying to get the help you rightly deserve. Everyone feels like that at some point, we all feel like we are complaining, but as has been said many times on here Maud, if you sit back and let the rest do it, they will get all the help and you will get nothing.

Keep fighting you'll get there in the end. You'll also get some new ideas and help on here.

take care

Eck xx

maud48

What you have made me see it that I have got to face up to this thing which is happening to me and deal with it.
Life has been so difficult in the last 2 years with taking in our grandson with all his problems and trying to get help to sort them out, dealing with our daughter’s many problems with alcohol and trying to help her (unsuccessfully as she doesn’t want help) plus my husband’s very demanding job. I’ve been thinking that the way I feel must be my own fault and if I could only pull myself together I’d be OK and haven’t been admitting to people how I feel. I’ve even been feeling bad about taking the 2 co-codamol a day which the doctor has given me and worried he will stop giving it to me and call me a drug addict!
Anyway things are going to change. I sat down last night and spoke to my husband, basically said we have to accept that I have arthritis and there are things I can’t do. I want to live as full a life as I can under the circumstances and not spend it moaning and complaining but you will have to support me. This doesn’t sound like much but is a major step for me as I’ve been trying to deal with it by myself and feeling guilty all the time.
I’m going to see my GP, as many times as necessary, until I can get the pain more under control and at least get some sleep.
Thnak you again everyone who replied supporting me and making me realise all this.
Maud

elnafinn

Wow, Maud, I am so very proud of you. Yesterday was a big day for you and a turning point in your life. I for one, am so happy that you found this site yesterday. We are right behind you. What you said to your husnabd was exactly right and I am sure you felt better in yourself for talking to him about it. It must have been a great weight off your mind.

I am the first to admit that you do have it very difficult at the moment and have done for a number of years but you never asked for this artiritis - none of us have , but we have it. None of it is your fault at all.

You will not be called a drug addict for taking medication to ease your pain. It has been prescribed by your gp. Never feel guilty taking it. It is nobody else's business what medication you are prescibed. That is between you and the medics and those that you wish to share that information with.

A problem shared is a problem halved even though there are no magical quick remedies. I wish there was.

You have taken an enormous step forward since yesterday and I for one, am very proud of you. I take my hat of to your husband too as it cannot be easy for him either and now that you have laid the cards on the table I hope things improve for you both.

Please keep posting and we will try to help you all we can - promise.

Love
Elna x

frogmorton

Hi Maud and agreat big welcome from me too
you sound a lovely lady who has a heck of a lot on her plate. most of us would have gone under years ago.
i am an ex sw and cannot beleive that they won't help you at all even wityh some respite? con you try thr community nurses? sometimes they have respite services too. is he getting the benefits he should be? that could help pay for some of the help you need.
as for your arthur go with the excellent advice so far and go back to GP.
do let us know how you get on
Love
Toni x

elnafinn

Dear Maud

You say you are on coco. Have you been prescribed an anti inflammatory med as well? These help me. I have OA. Have you ever had a blood test to rule out rheumatoid Arthritis? I know you were diagnosed with PA but much more recently OA. I presume you have had xrays taken along the way since being initially diagnosed. Out of interest have you ever had an MRI on your spine?

Luv
Elna x

lindalegs

Hi Maud

Just wanted to add my welcome along with everyone elses. You sound as though you've started to turn your life around and sometimes that's the hardest thing to do - as it can be easier to carry on in a rut and not admit that things are getting on top of you.

I'm sorry you can't seem to get any help with your grandson - I feel if you could that would be a massive weight off your shoulders.

Keep posting and let us know how you go on.

Luv Legs

maud48

Hi Everyone
Having a lazy day today as didn't sleep last night, nearly every part of my body was hurting even my toes, still hey my elbows are fine!
Trying not to sleep as have to get up at 7am to take grandson to school and if I sleep today won't sleep again tonight. Still working hard on the guilt about being 'lazy' and it's certainly helping.
RE: all the questions, I've had no blood tests, only an X-ray on my neck. The consultant didn't really comment on that but the X ray technician asked if I'd been having problems and when I told him I was said he wasn't suprised as it looked very bad. That was a year ago and it's all got a lot worse since then. Was told by consultant had arthur in neck, knees, feet, spine, hands and more or less to go away and live with it. Feeling now my shoulders and hips are also affected.
Have GP appointment tomorrow, planning to write everything down before as advised on this forum - any advice on what I should say, ask would be greatly appreciated.
RE: grandson - as you said Toni we're also amazed at social services response. The latest route we're going down is to get a residence order as when we get that we can ask them for a carer's assessment (he gets disability living allowance and I get carer's allowance for him). We've tried to get help as he is disabled but apparently he doesn't fit their criteria for disability! Also tried to get a blue badge for the car but same response. That's really important as where we live in town parking is impossible. I can't take him out without a pushchair or car as he runs away or lies down and I can't catch him or lift him (thinking of trying lying down on the pavement with him and seeing what happens!), and can't use the car as I can never park anywhere near our house. I'm just about managing with the pushchair but he's really too big and heavy for it and for me.
Will keep battling, but isn't it sad that we all have to fight for our rights,
maudxx

elnafinn

Dear Maud

I hope you have been able to take it easier today and feel a little better for it.

I presume this gp you are booked in to see is not the one that you normally go to. I hope not because he appears to be totally unsympathetic. I think you have to tell your gp what you are telling us.

As far as I am aware, the GP can help arrange a Blue Badge for you. If they are reluctant to give you one, who do they give them to, in your area, I wonder? You need one not only for yourself, but also because you are the main carer for your grandson. To me you fit the bill exactly as a person that needs one desperately.

I feel that after your appointment with your gp you need to have a follow up appointment made to see him in a week or so as you may not be able to give a full picture in one appointment which usually lasts about 10 minutes, unless you booked a double appointment which I understand one can do.

I hope things start moving in the right direction for you both very soon.

Love
Elna x