Psoriatic Arthritis

stickywicket

Ann, I really don't mean to sound unkind but you seem angry and, indeed, angry with us on here.

We're only trying to help and, if you'd rather we didn't, just say so and I, for one, will leave you in peace.

We each have to opt for the solutions that seem right for us and for our circumstances. You clearly know what seems right for you and that's good. I'm genuinely pleased for you.

I just can't help wondering why, if your 'bloods are OK' your rheumatologist would want to increase the meth. It would appear pointless. If your bloods are not OK then a 2.5mg increase isn't much. And I was told, long ago when I was on 22.5mgs that that was the highest dose we could / should have. Hence my query about whether or not much of your pain might be from OA.

dreamdaisy

I have reread your posts and what comes flooding through is your anger, distress, frustration and hurt in that currently the arthritis appears to have the upper hand. Do what you have to do for you and I wsh you well. DD

Annfield

I am not angry just frustrated at repeating myself and also in pain at the moment. As I have said I also have Psoriasis so the Methotrexate is being increased to control that too. What I haven't said is I use to get regular ear, throat and chest infections obviously due to a low immune system. I'm sorry I don't have a better answer. I have to trust my dermatology and rheumatology consultants. I just know what they tell me and how I feel. If you read my last post I haven't had my last set of blood results yet. When you say angry with "us" who do you mean. I think I have answered all the questions put to me. Some more than once. As I am sure you appreciate it is hard typing when your hands are sore and when the question has been answered or my post not read properly it is very frustrating. I feel like I am having to justify why I wont change my life or meds. If I have OA or PsA. I welcome advice but please don't be annoyed if I don't, won't or can't take it. I still thank you for your advice.

Annfield

Dreamdaisy. Thank you Thank you Thank you. You get it and I really do appreciate it. No one wants to get up and go to work when they feel like **** and in pain. If I didn't have to I wouldn't. No one wants people doubting what they are saying. Its very frustrating. I have 2 types of arthritis but I am an expert in neither. I came to this site to give and receive support to other people in the decisions they make. Not tell them they are wrong. We are all individuals with different circumstances and pain levels. Once again thank you t69044

[Deleted User]

Hi Annfield

I've been reading through the different replies from forum users, it may be idea that you may wish to speak to our Versus Arthritis Helplines, if you haven't done so already. As Brynmor indicates, Versus Arthritis offers support in different ways and perhaps a chat to our experienced Helplines may offer support/advice you are looking for.

Helplines 0800 520 0520

Hope this helps.

John

Annfield

Hi John. Thank you for taking the time to message me. I will make the call as you suggest. I am just waiting until I get the house to myself. I am feeling quite down at the moment and don't want my family worrying about me...…….Ann :oops:

daffy2

I was sorry to read that you felt people were doubting what you were saying, perhaps as a consequence of all the questions, and that you felt you were repeating yourself, again because of the questions.To me, each of your posts gave more information, and a better picture of your situation, and didn't read as repetition.
There were a couple of things you mentioned which I had thought to raise with you but I can sympathise with not wanting to type when hands are sore, and realise you are feeling low so I'll leave them. I do hope that this difficult time is one of those blips which arise, and that things resolve for you.

Annfield

Hi Daffy2. Thank you for your message. To be honest I found quite a bit of helpful information here. Stuff I didn't know. All I do know is I have 2 types of arthritis bursitis in my hip and I've just been informed I have inflammation in my knees and I just get on with it. It has flared and I am having pain everywhere. I don't really ask my consultants any questions I just do as they tell me, take what they give me and in 6 months time let them know how I got on. I get my bloods done every 6 weeks. My appointments are usually before work or after work when I'm on nights so I am tired and to be honest after 30 years of hospital appointments I am sick of the place (but I am very very grateful for the treatment I receive and appreciate it} The questions I have been asked on this site I have never been asked before. I don't talk about my arthritis so I don't know how many DMARDS other people are on. Obviously there are some things I want to keep private. Every time I post here I try and give as much info as I can and want to give so that I am not repeating myself. I suppose I have just never been interested In my arthritis because I have been so obsessed with my scabby, red, sore, flakey, thick skin which covered my body including my face. I knew I had arthritis but nobody else did. I couldn't hide my Psoriasis

daffy2

Ann, your post would be an excellent one for 'newbies' to read, to reassure them both that there is life after diagnosis and that the horror stories they might have read about methotrexate aren't the full(or even partial) story.
Over 30 years the appointments do add up so I'm not surprised you are 'sick of the sight of the place', but it's interesting you still have 6 monthly checks and 6 weekly bloods; many people's experience, certainly in my part of the world, is that once some sort of stability has been achieved the frequency is reduced so, as you say you have good care.
I couldn't help a wry smile at your comment about you focusing attention on the all too visible skin problems rather than the arthritis side. One of the unhelpful 'outsider' comments that many on here face is 'but you look so well', because the RA or whatever isn't displaying external symptoms. Psoriasis is a horrid thing to have to deal with; someone I knew 40 years ago solved his by making a new life in New Zealand, but that's not an option for most! At least my eczema, which flared horribly at puberty, had the decency to largely disappear once I'd left school - the memory of peeling my collar off my neck at the end of the day because we had to wear buttoned up shirts with a tie still makes me squirm, and so I have every sympathy with those who struggle with such skin conditions.

stickywicket

Ann, to answer your question, when I wrote that you seemed angry with 'us' I meant with those of us who are replying to your thread. It might be that you're merely angry with me so I shall take myself off and leave you in the capable hands of the others. I aim to help not hinder

I hope you can find some reconciliation between your arthritis and your future plans which will make for a more peaceful life. Have fun. be happy

Annfield

I have never talked about my arthritis. I have had to talk about or explain my Psoriasis because unless I wore a bag on my head I couldn't hide it. Having this bad flare after so many years of just being in a bit of pain and a bit uncomfortable has been a shock to my system and made me feel very vulnerable and unable to cope. I rang the Versus Arthritis helpline and had a very informative and helpful chat with a lovely lady who has given me lots of positive things to think about. She is the only person who has told me there are possible ways which may keep in in work and help me cope better. She said she didn't have a magic wand, but she has helped me so much today. I am very grateful

Ansam

Annfield wrote:

Hi. I have had Psoriasis since I was 13 years old and Psoriatic Arthritis since my 20's. I know people with Psoriasis but I don't know anyone with Psoriatic Arthritis. No one I know had heard of the condition until they met me. I am now in my 50's and flagging. I work full time, long hours and shifts and I am really struggling physically and emotionally. How do you cope with this horrible painful condition. I like my job but it can be physically and mentally demanding. If I could afford to give up work I would. I have no social life or hobbies because I'm knackered all the time and in pain. I'll take sympathy, empathy and advice. All comers welcome. If you have read all of this thank you t69044

Hi Annfield, I think you must be incredibly strong to have suffered this dreadful illness for so long! I'm now in my sixty-second year and was diagnosed about two years ago, although I had been suffering for some time before this. I'm seldom plagued by the Psoriatic side of the thing, but the other symptoms are often debilitating and sometimes painful.I eventually determined to give up my employment which was, in part, quite physical in nature and mentally very demanding.I would like to offer a little advice which stems from my own experience: If you are able to continue working, gain as much help as you can from your employer and try to stick it out. Since 'retiring', I have gained a lot of weight due to lack of exercise. And although the 'exercise' I was getting at work was 'uncomfortable' it was both regular, organised, and there was a strong motivation to do it. This lack of exercise and gaining of weight creates a vicious circle which is difficult to break free from, i.e. The extra weight makes it difficult and painful to exercise... It is dreadfully demotivating and mentally stressful.
As to Hobbies. My hobby blossomed into my employment for the past twenty years and I came to teach ceramics, glass making, mould making and a large variety of other 3D craft subjects at the local Art University. Now, although equipped with a good workshop, that has taken years to build up, my fingers, knees, back and neck, make it difficult to use. This required yet another 're-invention' of myself and more sedentary hobbies were looked into. I now use my PC to record audio book stories for LibriVox (who's intent is "To make all books in the public domain available, for free, in audio format on the internet". It can be taxing, but very fulfilling. I also use my PC and various (mostly free) software to compose music (to entertain no one but myself), again quite mentally taxing, but allowing a sense of achievement. Both of these hobbies have attached a kind of 'internet socialisation' which I find helpful.
I can totally empathise with you; I think the most difficult part of keeping going (whilst in work) is getting beyond waking up feeling as knackered as yo were when you went to bed and finding the motivation to do that days grind.
When you're not too knackered, I would be glad to 'talk' more.

When people, even family, would ask me what my 'problem/ailment' is I usually tell them "Well it's a bit like having RA but with some nasty rashes thrown in for good measure!", sadly they seem none the wiser, or willing to listen further.

[Deleted User]

Hi Ansam and welcome to Versus Arthritis.

Thank you for your supportive posts on the forums. I'm sorry to hear you have Psoriatic Arthritis. If you need any information about it we have a useful page on our website:

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

The problem of exercise and weight gain can be very difficult - the section "What can I do to help myself?" on the page listed above has some ideas. Getting a referral to a physiotherapist might also prove useful if you want help and support in developing a good exercise regime.


Congratulations on "re-inventing yourself"

Its something that's forced on a lot of us with the various forms of arthritis!

Best wishes
Brynmor

Annfield

Hi Ansam. Thank you for your message. I have had some support in work. The last month has been particularly difficult for me and I have struggled to do my job. My manager has been very understanding about this but I don't think he realises its a degenerative condition that wont get any better and that I will have ups and downs. I am not sure how patient they will be if I have more flares. Access to Work have suggested a chair which work has supplied. Versus Arthritis are sending me some literature that I will take into work to give them a better understanding. How long ago did you retire ? I use to walk/ramble as a hobby. I loved it. I belong to the Ramblers Association. We went on walks in beautiful places and had some lovely weekends away in hostels but I cant do that anymore. Since I have stopped rambling I have put on weight which I am not happy about. I joined a slimming club and lost over 1 stone but couldn't make all the meetings so stopped going and the weight went back on. I also use to make costume jewellery.

I am sorry you had to give up work. It sounded like a very interesting rewarding job. Its a difficult decision to make when mentally your not ready to stop working and possibly financially.

Do you record the books with your voice ? I have a Liverpool accent. I am now laughing at how my audio books would turn out. I find it hard not to type in my accent or even think in a scouse accent so I definitely couldn't talk without it

I am so glad you have found other hobbies. I am sure your knowledge would be invaluable regarding the crafts you use to teach and though you may not necessarily be able to physically make things I think you are still an asset in that field.

I try and read a lot but find myself falling asleep after a few pages. I am reading The Pianist at the moment but I usually read a lot of true crime books on my Kindle. In the future when I have more time I would like to make scented candles.

Sometimes I think people ask how you are out of habit or politeness. I don't think they always really want to know how you are. To be fair I don't think they understand, especially when the thing that's causing the pain isn't visible.

I look forward to hearing from you again...……...Ann

frogmorton

Bang on there Ann!

"How are you?" is a greeting not a question in this country. The expected answer is "Fine thanks how are you?"

Not many people really do want to know how we are and hear all our troubles which can't be 'fixed' easily

Good to see you have plans and ideas for the future like making candles.

Take care

Toni xx

Annfield

Hi Toni. I love scented candles. I buy lots of them. I bought wax tarts that smell like channel perfume. I've got the how to books on my kindle now I just need the time and energy. I go to the theatre too. Mainly comedy shows. I love travelling but not this year or next as I am spending money on my home.

I don't talk about my arthritis because I don't think people really want to know, also I don't want to be that person who people avoid because I am always moaning. If I am honest I am guilty of swerving people because I don't want to hear about their latest ailment. People get bored of hearing it. Especially when they have their own stuff going on. I then feel guilty and seek them out and listen anyway. I realise that everyone needs to off load. On here we are allowed to moan because we all have arthritis or are looking after someone with arthritis and we understand.

All the best …………………...Ann

dreamdaisy

Hello, how are things going? I hope something, somewhere, has improved so lifted you at least a little. DD

NorthC

Hi. Have been told by my consultant I have Psoriatic arthritis and have been wearing a surgical boot for the last 10wks because of the problems it has caused on my left foot, mainly my big toe. Can not put pressure on my foot without breath taking pain and can not move my toe. I'm struggling with pain all over and can hardly move each day, especially in the mornings. My psoriasis is on the back of my head so have had to have the underside of hair shaved off in order to apply creams etc but nothing seems to work and its sore and itchy all the time.
I end up ripping my head to bits in the night when I (eventually) fall asleep, which obviously doesnt help.
On strong painkillers for the pain which doesnt really touch it but havent been started on any treatment- is there anything? Waiting for appointment with GP and another with orthotics to see what they can do with foot other than surgery to fuse the toe completely.
I'm 37, have 2 children (14 and 7) and work 30hrs a week which is such a struggle.

[Deleted User]

Hi NorthC,

Welcome to the forum. I am sorry to hear you are having such a difficult time. It sounds as though you are dealing with immense pain and discomfort at the moment. Managing work and family commitments on top of this can seem overwhelming at times.

Please know you have come to the right place for support and advice. I'm sure our members will soon share their own experiences with you but in the meantime I have provided some information you may find useful.

You mentioned you are looking for information on treatment options. Although we cannot offer medical advice on this forum, I have provided a link from our website with information on various treatments for psoriatic arthritis which I recommend you speak to your doctor about.

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

In regards to pain management, different things work for different people so I have provided a link with some pain management information. I do hope you find some of this helpful.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

There is also our helpline team who are available to talk in confidence if you need.

0800 5200 520 (Monday - Friday, 9am - 8pm)

Please join in the forums and let us know how you get on.

Best wishes,
Alice

stickywicket

Hi NorthC and welcome from me too.

I'm a bit puzzled as you've clearly seen a consultant, been diagnosed with PsA and been prescribed a surgical boot and orthotics and discussed fusion surgery but no Disease Modifying Anti-rheumatic Drugs? Or, is it just that you've not yet had a chest x-ray which is usually required first?

The DMARDS are what you need to help hold back the disease. Your GP might be able to help with something for the psoriasis. My own take on painkillers (a real misnomer) is that, if they don't do anything there's no point in taking them but never just stop strong ones without advice from your docs.

Pain is something we have to learn to live with but we can tame it, to some extent partly by the stuff in the link that Mod Alice gave but more by DMARDS. Have they not even been suggested?