Psoriatic Arthritis - feeling low

ms_seronegative

I am 30 and have psoriatic arthritis. I've got some questions, but thought it best to give some background first.
It started in my right foot when I was about 14 and carried on until around 21 after which it went into remission. Around 2002 my left knee started to become swollen and stiff, but I left it for long time as it didn't seem to be affecting my life until, in 2005 it became much worse. It progressed further until, in November last year, having tried and failed with a number of drug treatments I finally had a full open surgery synovectomy.
My leg had detoriated so much in that time that all muscle strength had gone and I could no longer straighten or bend my leg beyond around 70-80 degrees.
The op has been a success in that the swelling has not recurred, but it is still very painful, weak and the range of movement is still poor. I have weekly hydro and physio therapy.
Unfortunately recuperation is being hampered by the condition flaring up in the other knee, both feet and right ankle. I have been taking Leflunomide for around 6 weeks now, but it is still too early for it to work.
So I have a number of questions if anyone can help -
Has anyone had the same op and if so what sort of recovery time, pain levels and range of movement are you experiencing?

Despite a really supportive partner, friends and family, I feel alone and as though I am some sort of freak. I cry all the time, even over nothing and have absolutely zero energy.

I am just about able to hold things together at work by sleeping and resting at the weekends, but am getting frustrated with not doing anything other than thinking about the pain and the lack of mobility.
Does anyone have any coping strategies or advise on managing the arthritis, rather than it managing me?
Thanks.

mistywillow

ms_seronegative wrote:

I am 30 and have psoriatic arthritis. I've got some questions, but thought it best to give some background first.
It started in my right foot when I was about 14 and carried on until around 21 after which it went into remission. Around 2002 my left knee started to become swollen and stiff, but I left it for long time as it didn't seem to be affecting my life until, in 2005 it became much worse. It progressed further until, in November last year, having tried and failed with a number of drug treatments I finally had a full open surgery synovectomy.
My leg had detoriated so much in that time that all muscle strength had gone and I could no longer straighten or bend my leg beyond around 70-80 degrees.
The op has been a success in that the swelling has not recurred, but it is still very painful, weak and the range of movement is still poor. I have weekly hydro and physio therapy.
Unfortunately recuperation is being hampered by the condition flaring up in the other knee, both feet and right ankle. I have been taking Leflunomide for around 6 weeks now, but it is still too early for it to work.
So I have a number of questions if anyone can help -
Has anyone had the same op and if so what sort of recovery time, pain levels and range of movement are you experiencing?

Despite a really supportive partner, friends and family, I feel alone and as though I am some sort of freak. I cry all the time, even over nothing and have absolutely zero energy.

I am just about able to hold things together at work by sleeping and resting at the weekends, but am getting frustrated with not doing anything other than thinking about the pain and the lack of mobility.
Does anyone have any coping strategies or advise on managing the arthritis, rather than it managing me?
Thanks.

Hi there, sorry to hear things are so painful and difficult for you. It is draining being in pain all the time so maybe that should be your first port of call- to try and get your pain under control. There are many drugs that do make arthritic pain more tolerable, and with less pain you will be less tired an not so overwhelmed by everything. I have RA not PA but there are many others on the site that have PA and they will be able to tell you what they take that helps them.
Heat pads, or ice packs can help. Pacing yourself and prioritizing what really needs doing and what can be left can also help when you feel its all too much.
Sometimes gentle exercise such as swimming can help mobilise you and strengthen your muscles without increasing your pain.
I'm sure the others will be along shortly to give you their ideas
take care Gillx

skezier

Hi,
Sorry you down just now, it can get hard can't it. I only have oa just now but it does sound to me like they could do a bit more for you via pain control at least.

When I first found this site I was at my wits end, I am becoming less and less mobile and more and more useless. I felt alone and I have so many responsibilities and I was running scared. Then I found this site and here I bumped into the most incredible support and I have been able to break the circle. Some times all you need is to know it's not just you.

My coping mechanism is odd but its a mix of meditation, relaxation, insanity, denial (not good) and humour. I think we all need to find out own way through it but the meditation and relaxation are good starting points if you can do it.

Nice to meet you by the way and take acre, Cris

mrsdalloway

Hi I feel for you I was diagnosed with PA 13 years ago after the birth of my first daughter. Please hold in there it does get better but I found that I had to go through the whole range of emotions from anger, denial and feeling sorry for myself. You need to find out what works for you and this will take time. The best way I have found is to view all the little set backs we get with this disease as just that set backs you won't feel bad all the time (it just feels like it! lol) just keep thinking I have to get through this bit and then you will be rewarded with a time when you feel a little better. It reminds me of when my eldest was born and didn't sleep for the first 4 years you keep thinking it won't last for every it just feels like it. I won't bore you with the rest but if you want to chat please feel free to pm. x

elnafinn

Hi Ms S

Welcome to the forum first of all. It is a great place you have found and you can make lots of cyber friends and you will not feel alone, starting now. We all try to help each other if we can and even if we cannot we still say hello. At least you know you have found peeps who do understand what you are saying and how you are feeling. Sometimes is helps to write it all down. You will get support here.

I am really sorry that your recuperation is slow but at least things are improving even if nowhere near as quickly as you would wish because of other probs getting in the way. It is good you attend weekly hydro and physio and presumably exercise as and when possible inbetween. That all sound pretty positive to me.

As to coping. I find laughter is a great tonic. I do try to look on the positive side of life, whatever is thrown at me. Having a partner that makes me laugh, helps greatly too.

You are doing well, don't underestimate yourself, look forward to hearing from you again, chin up,

Luv
Elna x

eckstardeluxe

Hi. I'm sorry I can't answer your questions as have OA but just wanted to say I'm sorry you are feeling so down. It really takes the wind out your sails some days but you will get lots of help and support from the people here. They really want to help you and try and make you feel better, somedays I feel so low, I come here and feel much better. Hopefully you can get some comfort too. I hope you feel better soon, take care

Eck

ms_seronegative

Hello all

Thanks so much for everyone's kind words and ideas. Of course I cried reading them!

@Gill - you are right, if I can get the pain under control everything else should follow. I'm going to speak to the doctor about the effectiveness of the pain killers I'm on.
I do still try to do everything and still haven't worked out the best pace for me. Thank you so much for helping me when I'm down, hope I can help you at some point too.

@Cris - yes, I am finding the support from this forum helpful already, glad it has helped you too.

@mrs dalloway - blimey 4 years without sleep! That is enough to make anyone cry. I bet now your daughter is older (and hopefully sleeping) it all feels worth it? Thanks for you support, it really means a lot.

@Elna - thanks for your encouraging post. I think you are right - laughing and trying to counter balance any negative thoughts with some positive ones is great advise. Thank you so much.

@Eck - I have taken some great comfort already from everyone's posts. Thanks for yours, feel free to chat if you are feeling down at any point as well.

Look forward to hearing from you all again.
x

carolyn37b

Hi there, I thought I would drop you a note to say hello and say that I totally understand how you feel and you are not alone.

I was about 33 when I got diagnosed with Sero-Negative arthritis. my son was approx 5 months old when I first got diagnosed. The pain started in my left foot, then the right and has worked itself round my body. It was heart breaking going from being a very active person to feeling that I was not being a good mum as I could not even pick up my baby boy. I cried every day for over a year. I would put on a brave face to everyone and said I was coping but I defintely was not coping!

Work were very unhelpful - when I returned from maternity leave they put me through 2 different medicals as they didnt believe I was ill, they made me apply for my job against 2 people who worked for me & then made me redundant! Despite the pain, upset and anxiety I fought back. I took the company to tribunal and after approx 4 yrs won my case!!

I have good days and bad days, have had to slow down and be choosy over what I do. My house is chaotic but I have also learnt that when people come over they are my friends and that they wont judge me on having a bit of clutter around. It took me an awfully long time to be open and admit to my friends and family if I was having a bad day - when I did they were totally understanding and supportive.

I wish you all the best, the comments from the other kind people are lovely and very true. II know its hard to laugh when you feel so low but hopefully the next day will be a much better day. This is a great forum as its great to chat with people who have similar problems. Keep smiling

Carolyn

helpful

ms_seronegative wrote:

I am 30 and have psoriatic arthritis. I've got some questions, but thought it best to give some background first.
It started in my right foot when I was about 14 and carried on until around 21 after which it went into remission. Around 2002 my left knee started to become swollen and stiff, but I left it for long time as it didn't seem to be affecting my life until, in 2005 it became much worse. It progressed further until, in November last year, having tried and failed with a number of drug treatments I finally had a full open surgery synovectomy.
My leg had detoriated so much in that time that all muscle strength had gone and I could no longer straighten or bend my leg beyond around 70-80 degrees.
The op has been a success in that the swelling has not recurred, but it is still very painful, weak and the range of movement is still poor. I have weekly hydro and physio therapy.
Unfortunately recuperation is being hampered by the condition flaring up in the other knee, both feet and right ankle. I have been taking Leflunomide for around 6 weeks now, but it is still too early for it to work.
So I have a number of questions if anyone can help -
Has anyone had the same op and if so what sort of recovery time, pain levels and range of movement are you experiencing?

Despite a really supportive partner, friends and family, I feel alone and as though I am some sort of freak. I cry all the time, even over nothing and have absolutely zero energy.

I am just about able to hold things together at work by sleeping and resting at the weekends, but am getting frustrated with not doing anything other than thinking about the pain and the lack of mobility.
Does anyone have any coping strategies or advise on managing the arthritis, rather than it managing me?
Thanks.

I really feel for you as I also have psoriatic arthritis and it started in exactly the same way with my right ankle - I was 33 when it first started.

My rheumotologist has been very good and you have to make sure that you are constantly on medication, if it hasnt helped then insist it is changed, that is the only way to stop your joints being damaged. I also found it a lifesaver to go onto prednisolone every so often (not for too long as it is not good for your bone density)as it takes away the inflamation completely and then you have enough strength and peace of mind to sort out your medication properly. My GP gave me the prednisolone.

Good luck and hope you feel better

ms_seronegative

Hello
I am interested in this prednisolone. What is that exactly?

I am seeing my rheumatologist consultant tomorrow, so I could ask her about it.

I have been signed off work for 3 weeks due the flare up in my feet and depressed mood. Plus anaemia, thrown in for good measure.
Hopefully a rest of both mind and body will help, as well as give work a kick up the back side with giving me some help and flexibility.

I have been on the Leflunomide of 8.5 weeks now - what is anyone elses experience of how long it has taken to work? I know it can be anything up to 6 months as a worst case, but hoping not!

Thanks for all the lovely messages - Carolyn, it sound like you have really be through it. How are you managing now?

Speak soon

mrsdalloway

ms_seronegative wrote:

Hello all


@mrs dalloway - blimey 4 years without sleep! That is enough to make anyone cry. I bet now your daughter is older (and hopefully sleeping) it all feels worth it? Thanks for you support, it really means a lot.

x

She is now a big stroppy teenager and I cannot get her to wake up now! There's kharma for you lol

helpful

ms_seronegative wrote:

Hello
I am interested in this prednisolone. What is that exactly?

I am seeing my rheumatologist consultant tomorrow, so I could ask her about it.

I have been signed off work for 3 weeks due the flare up in my feet and depressed mood. Plus anaemia, thrown in for good measure.
Hopefully a rest of both mind and body will help, as well as give work a kick up the back side with giving me some help and flexibility.

I have been on the Leflunomide of 8.5 weeks now - what is anyone elses experience of how long it has taken to work? I know it can be anything up to 6 months as a worst case, but hoping not!

Thanks for all the lovely messages - Carolyn, it sound like you have really be through it. How are you managing now?

Speak soon

Prednisolone is a steroid so can only be taken in short bursts but it really helps to dampen down the pain and inflamation and helps the other drugs to get to work.

Good luck at the rhumy tomorrow

Abi

ms_seronegative

Hello
Well as luck would have it the consultant gave me some Prednisolone and I have been taking it for 5 days now.
It has helped a lot!!!
With a combo of still not doing too much and my usual painkillers I was walking almost normally yesterday.

Hopefully the other long term drugs will kick in soon and keep this feeling of being normal again.

Thanks!

frogmorton

Oh well done Ms Sero!
I am pleased for you. That is good news and I too hope the other meds kick in soon.
Take care
Toni xx

mrsdalloway

ms_seronegative wrote:

I have been on the Leflunomide of 8.5 weeks now - what is anyone elses experience of how long it has taken to work? I know it can be anything up to 6 months as a worst case, but hoping not!

Hi just re-reading your thread hope things are easing up a bit. I tried leflunomide and they didn't kick in at all for me and my esr kept rocketing. Eventually after much crying and tantrum throwing I was prescribed anti-tnf humira and it has been a god send. Almost immediately (day after) everything worked and I didn't have to hobble! So don't be disheartened there is stuff out there but because of the cost they don't advertise the fact too much. Also, I didn't mention in my previous reply but I had tkr in '06 but because they had left me for so long with wonky leg even after the op I never regained anything near full bend in it. Even with 2 physios jumping up and down on it after, oh and a manipulation under anaesthetic! I just thanked the lord that the pain had lessened. Sorry bit of an essay!