Arthiritis - help!

[thequeenoftheandals]

First time poster, very long time lurker

Not really an AIBU because I know I am not but wanted somewhere to vent.

My partner is in his early 30s and has been diagnosed with inflammatory and psoriatic arthritis. Though we've had the diagnosis for a while now, his health has very recently severely deteriorated. He's in a lot of pain and the condition is causing him crazy fatigue, memory loss and lethargy. I try my damnedest to help where I can and though it is probably impacting me and my mental health, but for now he takes priority.

We are managing as best we can but the issue is his family. Unbelievably, DP's family are so unsupportive and refuse to understand the limitations that his condition causes and they heap so much extra anxiety and pressure on him when he cries out for help/says no. For example: his brother asked for some help when moving house and clearly DP wouldn't be able to be of any assistance as he's unable to bend his knees repeatedly. Partner's brother got really annoyed and retorted that he helped us when we had moved. DP is so generous and so giving that prior to the health decline, he would have offered to help himself. Those types of cutting comments are not helping DP's mental health and he feels worse.

DP has said he finds it very difficult to talk to his parents and siblings about his health as they are dismissive/in denial about his health which will only get worse. DP comes from a very close knit family and though he says he's fine and doesn't need their support, I am concerned that he does need and is aching for that family support for which he has always previously relied on.

I just feel so arghhhh all the time, and know I am not being unreasonable, that he's dealing with so much himself and instead of helping they are making him feel worse.

Can I do anything else to make it better; does anyone have any experience in dealing with a partner with psoriatic arthritis?

I feel for you both, I know what it's like to actually live with arthritis. Thankfully mine is well controlled. Has your partner been offered any biological drugs, they are either injected or given as an infusion. They have given a lot of people their life back, me included. Maybe he could give his close family some leaflets about the disease to show them what he is dealing with and that the condition is incurable. They need to know it's not just the odd ache or pain he is suffering.

Chronic pain is dreadful, just be there for him and be on hand with cold packs or hot wheat bags to help ease some of his pain. I hope he manages to get his condition under control soon. A friend's husband was diagnosed with the same type of arthritis and once it was under control you would never have known. Likewise with me, no-one knows unless I tell them and believe me I have been through some dark times due to pain.

I have PsA, diagnosed when I was 40. It's amazing how much it affects you, it's not just sore joints. He has my sympathy. Most people see arthritis as an old person's disease and because its often not visible people dismiss it. My family and friends are really good but I think my OH just doesn't get it. Your DP has a long term condition and he needs to find ways of managing it - is he under a rheumatology team, OT, PT, podiatry, taking analgesia etc. They can all be helpful but ultimately he needs to learn to say no to his family.

I have PsA and im on biologics but unfortunately it's only bio similar and they don't seem to be working, my 22 year old son has AS and I keep telling him to slow down and say no to people as his body will burn out before he is 30.
It's a painful way to live and it isolates you.
Hugs to you all.

Queen, good for you for having empathy for your partner. It's hard for someone who doesn't have it to understand how painful it is and the many ways it can affect you. It doesn't just hurt and make it hard to move, it also makes you tired and wears you down. The inflammation is harmful systemically. I agree that biological drugs (when they're working!) are a great help. So is having someone who loves and cares about you. Your solidarity makes all the difference in the world. If you keep advocating for him and educating them, they'll just have to get it one of these days.

Thanks to you all for responding @nononever @onanothertrain @6demandingchildren @durgasarrow

He is under the care of a rheumatologist and is currently taking the biologics after the steroid injections and oral pills stopped working. I just feel so useless and I so wish I could take the pain away. I suffer from fibromyalgia myself so perhaps it actual helps our relationship that I know and understand chronic illness.

Could I ask if anyone has been successful in obtaining a blue badge (in England) for PsA? On 30 August. the Govt extended the scheme to include hidden illnesses and I think being able to limit the walking on DP's bad days would really help him.

I have Psoriatic Arthritis, I’ve had it 13 years. Unfortunately mine is very poorly controlled and none of the currently available biologics have any sort of notable effect on me.

PsA is SO much more than a swollen knee and a patch of scabby skin, it is a complete assault on your whole body, the pain and fatigue are the biggest factors for me. I’m having a big flare at the moment and I’m on the verge of tears all the time because I’m just totally exhausted. I’m lay on the sofa in my pj’s just now, trying to summon up the energy to go upstairs to the loo

I have a Blue Badge, in our LA the criteria is that you should be in receipt of higher rate PIP/DLA to be eligible. It’s a massive help to us on the days that I am able to get out and about with DH (can’t drive myself anymore).

Not sure how the Blue Badge system works in England (I'm in Scotland) but my mum-in-law successfully applied and got one after getting a letter from her GP. Your partner can ask his consultant if they could write him one.

Hopefully the biological drugs work for your partner. I remember 25 years ago sobbing my eyes out after being hospitalised in a rheumatology unit due to an acute disease onset immediately after the birth of my daughter (she was 5 weeks old at the time) and there was a news article about a new wonder drug for RA. My consultant said it would be a long time before it was approved as it was early days. Nowadays there are a lot of bio options available.

I've had a few friends and colleagues with PsA and in each of their cases, it was linked to the HLA b27 gene and treated with immunno-suppressant drugs, with moderate-to-good success.

I have RA and have just had my meds upped as they aren't working. Some days I crawl to the bathroom sobbing because I am in so much pain and so tired. I am exhausted at night but the pain keeps me awake.

Most people have been very supportive, but others haven't. Now I just say no and explain that I am now regarded as disabled. I have also sent them photos of my inflamed joints which did shut a couple of people up.

There can sometimes still be a lack of understanding over hidden things like this. Some people are also just selfish and don't really care, as long as they get what they want.

Reading other posts a lot of practical suggestions there .
So sorry that you are going through this pain . Thank goodness you have each other .
You say DP family is close knit . He must tell them exactly what he's going through as being accused of just deciding not to help one of them with a move is really very upsetting . It sounds very selfish when they should be offering help and total understanding . Can you enlist the help of the most empathetic member of the family ? I'm sure neither of you want to keep having to refer to these health issues . Hope things improve xxxxx

I feel so appreciate of people like the OP, because I find these diseases (I have axial spondylitis) so hard to explain. The kind of grinding, unending pain, the way symptoms can move around, the way they make you feel so old. Ugh. OP, you may feel helpless, but your love and kindness are the greatest gifts in the world

I have a different form of arthritis but it impacts my life horribly. I also have family that refuse to believe the impact it has on day to day life and I get blamed for ‘not trying hard enough’ Or ‘having a defeatist attitude’ because apparently it’s mind over matter 🙄🙄

All I can say is what an amazing partner you are to have and with my own arthritis (and other issues) I receive PIP and due to points automatically got approved for a blue badge which has been a game changer for me and my independence.

Please apply!

I have RA and OA and honestly found that I had to lose my temper and roar before people realised I was not joking about the amount of pain I was in. I also sent photos of my swollen joints and if someone comes to my home when I am in pain I do not entertain them, they want a cuppa they know where the kitchen is.
I have a dh and 3 dc and sometimes I am so lonely because as much as they love me and help me they do not understand, which obviously is not their fault.
You or your DP has to be very direct and explain how bad it is. My DB had no idea until I was visiting him once and my hand blow up so badly I had to leave as their were other visitors and I was in serious pain. He could not believe how quickly it came on and he said my hand looked like it was broke. Funny he is a lot more sympathetic to it now.

I have PSA and when its bad its really awful. It IS fairly well controlled at the mo so dont stop pushing the Rheumatology team for a different solution.

As for his family can you enlist the most sympathetic and lay it out for them in graphic detail... His mum perhaps?

Thanks to you all for taking the time to respond to me.

It breaks my heart that this disease adversely impacts so many people yet there is so little awareness on it.

I 100% know his family are more aware than ever before - DP never shared any results, treatments with the family because he said he always feared they'd not understand; and it was me who encouraged him to share. It's been a while since they've known and at first I thought his parents were finding it difficult to understand/come to terms with the fact their son is dealing with an "old person" disease.
His mum is probably the worst in acknowledging his limitations and he's often compared to his (healthy) brothers. His dad has in the past implied that I am not helping him by allowing him to use me as a crutch and I should force him to be more independent.

The more I think about it, the more I realise how blessed DPs family are that they can enjoy the ignorance of good-health.

Wishing you all a speedy recovery and good health x

I know you mean well OP but your last sentence where you wish us a speedy recovery is a classically misunderstanding one. Did you mean to say that?

What us sufferers all have to tolerate is having to explain repeatedly is that these diseases are degenerative, meaning our pain and lack of mobility increases. Unless science and medicine improves dramatically beyond recognition, there is no chance we will have a recovery, let alone a speedy one.

As a sufferer of Ankylosing Spondylitis for 27 years now, I am NC with someone who was my sibling. After he accused me of faking symptoms to my advantage, I cut contact with him when it got extremely nasty.

When my child was 2 years old she was putting my socks on my feet for me.

That’s what my tosser sibling didn’t see.

These illnesses bring out the absolute best or worst in other people.

I tried secukinumab which didn’t work but the Etenercept Benepali has been a gamechanger. Add that to the Blue Badge and finally I am able to start doing things for my family again. It’s been a long time coming.

Oh no, I didn’t mean that at all; I think I was subconsciously hoping there was a damn recovery possible when I incorrectly typed that. Sorry if I caused harm.

Bloody hell I just basically did what I say DPs family always do.

I’m really sorry if I upset anyone x

That was a good exchange between Mochame and Queen. Well done!

Hi @thequeenoftheandals

It sounds to me like you are doing all you can. I have very severe Rheumatoid Arthritis, which is not under control and can fully appreciate what your partner is going through.

Do you know the best thing you can do to make it better? Carry on as you are, you may not see it, but he will appreciate you just being there and understanding. I have an amazing wife and two boys and to be honest, just having them is enough for me.

Apart from the pain, I have found it's the dark thoughts that come with this disease. Only this week I said to my wife that my first and last though every day is protecting them from seeing me at my worst. If I remember correctly, I said to my wife "you didn't sign up for this shit, it's not fair on you and the boys." She wasn't impressed with me at all. For me it's the overriding guilt I feel for putting them through this.

Regarding a Blue Badge, I am sure he could get one, I have, thanks to my wife kicking my arse and applying. What helped for me was to send the Council (they handle the applications) a copy of my Rheumatologists letter sent to my GP after the last consultation. He always includes what's called the disease score and it also had the fact that it was, as he put it "extremely active in multiple locations". I was successful in getting one and it really has made a difference. Any letters you have from a Consultant is great to have for supporting an application.

Sorry, I know this is a long post, but as far as people "not getting it" is concerned, leave them to it. Neither of you have to prove anything to anyone on how bad it is. What is important to you both is each other. What I find helps me when I'm bad is a lovely long cuddle from my wife, just not to hard though!

Both of you take care.