Honest opinion

I have not posted on here before. I have sero negative inflammatory arthritis now ? PSA.

Having a flare in lower back since November. Depot medrone settled it but came back with vengeance Christmas week. Had a MRI on SI joints 2 weeks ago now waiting for my nest appointment. He didn't want md to have more steroids until after scan.

I cannot sit comfortable in a chair. Having to roll out of bed and walk with furnitur in a morning. I am so tired all the time and ststing to feel ill in myself. I have to take my dogs for a little walk in a morning and that does ease the stiffness . Feel like I have done a marathon. Driving is very uncomfortable.

I have been off work for 3 weeks now.

My medication is Mtx 17.5 inj Sulpha 3 g Hydrox 250 Naproxen 1 g and tramadol Sr.

I do try to push myself under normal circumstances and I have 2 jobs.

My problem my other half wants me to go out walking todah then to dinner. He got ruffled when friends rang to say they would call round to visit me. He says why ? you are not an invalid or sick just a little bad back. We have nor been going out since you have been unwell and weather is nice.

He doesn't understand or I think he doesn't want to. Last week he thought I would be going to work my part time job. I am having trouble just sitting for an hour.

He is not uncaring really just gets frustrated with me and sort of ignores my problems.

I am getting meals ready ect .

Sorry to go on, but should I try harder. Am I just being a whimp or feeling sorry for myself.

Do not want sympathy just honest answers. And does PSA make you feel like this.

I do not get depression but feel a bit down when I get a flare with the frustration. At the moment I feel like crying and alone.

Thanks for listening.

20 Replies

  • Your hubby obviously never had a sore back I'm guessing? You need to take him with you to your doctor's opointment. Let the doctor explain what is happening to you. I suffered for 4 months with back pain from this dreadful desease.

    Take care


  • Thank you Suzanne Dale. He would not have time off work to go with me. Did once several years ago when I had my knee injected. We had to stop at a pub on the way home he found it stressful.

    What I am going to do is ask my Nurse at next visit for leaflets. Or the Dr if he does change diagnosis.

    Thank you for your support.

  • It's hard for my hubby to take time off work too. We are not rich as we live paycheque to paycheque. I've been off work for the last 4 weeks because of my swollen hands. I do get 50% sick pay but it just isn't enough with all our bills.

    I guess I'm telling you this as a possible reason why your hubby seems frusterated. He just might not realize his action is upsetting to you. PSA or RA is not easy to understand to people who don't suffer with this disease. He might be as afraid of this disease as you are and he just doesn't know how he can help you.

  • I hope your hands soon get better. You do not need the extra worry I know of finances when you are struggling with your health. I am fortunate that I get full pay for 6 month in my main job. Nothing in my second job.

    There are a lot of factors to take into account I know.

    It's good that people give their advice and make you think of the bigger picture.

    Do hope you hands settle soon. I have just found out my hairdressers who do beauty things too, have wax treatment for hands. This is wonderful. Maybe worth looking at your local salon's. Mine only charges 5 pounds too. Would rather have this than a haircut.

    Take care and thank you again.

  • PsA DOES - MAKE - YOU - FEEL - LIKE - THAT. The processes that drive the disease are a bit like what the body does when you have the 'flu virus ...... as I understand it anyway. I think the absolutely grotty feeling we get when we have 'flu is mostly down to the body attacking the virus, not the virus itself. But that is what a healthy immune system does so when the job's done, we're back to normal. However our wonky immune systems are attacking us.

    I hope that Mtx starts to deliver for you soon. If not, perhaps your rheumy will have a re-think. For me the fatigue (I think it's worse than the word 'fatigue' suggests) and the feeling of being, just as you say, ill in myself, gradually improved as the drugs kicked in. There is hope, hang on in there.

    Your other half just doesn't get it, does he? To be honest, I used to think that people with diseases that caused fatigue just needed to pull their socks up. It took getting PsA myself to enlighten me. I reckon suzannedale's suggestion is good, accompanying you to appointments might educate him about the disease and also make him feel kind of protective and more involved.

    There are quite a few good sources of information online that describe how PsA affects the whole person. I'm not sure if the Arthritis Research site lays it on the line enough but if it doesn't I am sure you will be able to find an authoritative site that mentions fatigue and the other symptoms that make life generally tough, especially at first. You could show him .... just tell him sorry, this is how it is, I need you to understand and be on my side. Or hand him the laptop and a beer if that works better ..... or all of the above! I bet he'll wise up in time, I hope so.

  • Postie your info is great and really helpful thank you.

    I like the laptop and beer. Think you must know him.

    Been on mtx a year now. Subcut since Oct. It has helped my hands and reduced some lumps on my elbow. Last depot made me feel so much better.

    My Nurse wants me on biologics it was her that has pushed the Dr more so since my back flared up. It will all depend on scan results and she wants more scores doing.

    This makes me nervous too. I just really need some help.

    I am goung to ask for leaflets and shove them in front of his nose.

    Really value your reply it has been a great help.

    Thank you.

  • LOL! Don't forget the beer with the leaflets! Also, at the risk of sounding sexist, men sometimes are very facts-orientated. There's a lot to learn about PsA and knowing how it affects us and the best way to treat it can be very useful, perhaps in time he'll take more of an interest in that respect .... I honestly don't know how my husband learned so much about PsA, he's obviously a lot brighter than I thought. But now he's a real ally & helps me with PsA-type decisions.

    I've never been scared of biologics .... probably because I decided they were what I needed long before finding a rheumy who agreed with me, so I had time to get used to the idea. I came to think that they really weren't that risky and that, in any case, the potentially widespread effects of the disease were riskier for my overall health. Humira has made a real difference to me.

    We're all here to help each other, so I'd say share your worries and have a good old natter about them, it might help a lot.

  • Won't forget the beer. That will be the most important bit.

    Wow how did you train your hubby ?

    Maybe I will have to revert to my dog training sheets and apply that to him.

    It has helped to get it off my chest , and for you and Suzzandale to reply. Do not feel as though I am making things up in my head and it is real.

    The biologics do not really scare me, I just want to get back to normal. Well for me.

    I am nervous of the consultation. What if the scan doesn't show anything and I am left like this. With the pain and stiffness surely it will confirm what he the G.p and Nurse thinks.

    I suppose everyone goes through that.

    Friends came round while he was at the pub or walk the dog to the pub. We had a good chat and laugh. They brought me a lovely plant and chocolates from the group we both work with alternate Saturday s. That really cheered me up.

    One of our friends has Vasculitis who works with me. He takes mtx and he tried to have a chat to other half last week. Just to try and tell him how the drug makes you feel grotty at times etc and he knows how I am feeling.

    It didn't work but will keep trying.

    They laughed at me and said I am walking like a weeble, we laughed and joked. Did me a power of good.

    I will shut up ranting now.

    Thank you again.

  • Your husband Is in denial. There are two types of husbands. Some husbands become the source of great support and strength when their wives become ill. The rest of them would not wish to be part of the spouse's "illness". A type of Disablism. I have known husbands who refused to visit their wives in cancer wards because they did not want to "see her that way". Quite immature. But this sort of sad mentality does exist. Whilst your husband would probably expect you to drop everything if he become ill but not when you are unwell. He tries to convince you that your disease does not exist hence you ought to act the same as before so that he would not be making any adjustments. This is all purely for his own convenience. You must speak out if he continues to remain dismissive of your needs. Some day, he may become ill and he would understand how it is like to be ill but in the meantime, he is being callously indifferent.

  • Yes I think it is denial. I am working on it. Strangely in the past 3 weeks I have twice told him, well shouted to him sorry I have a sore back one day you will be ill or have pain and I hope you remember.

    He is not a bad man just doesn't do illness.. when I am feeling better and stronger I am going to put him straight.

    Yesterday I just felt really low and could have cried.

    When I had my first surgery on my hip visiting time was from 6-8 he only made the last half hour.

    Thank you for your reply and strength.

  • Moomie,

    Hope things will improve for you soon (your treatment-wise). I'm quite curious how things will go with a man like this, too. I put my bet on "he will not change". The society has this indifferent / unkind attitude to people with some hidden disability which is unlikely to change anytime soon.

    Postle says: "To be honest, I used to think that people with diseases that caused fatigue just needed to pull their socks up. It took getting PsA myself to enlighten me."

    I agree that this is not something one can "educate or teach" a grown man. Education would need to start early at a primary school level. What will he do if you had something like MS. Would he run a mile? I have known some men who are dedicated to looking after their family members with some major illnesses. I keep telling them how awesome they really are. These men seem to get it. I often wonder if it's genetic ;-) Good luck & please take care. please keep us posted. :-)

  • Thanks. Do not think it is an age thing either. My Grandad who went through the war in Burma was such a kind Gentleman . He used to take my Grandma choclates home every Friday.

  • I hope the results of your scan help you to get biologics. That is the situation you're in, isn't it? I might have read you wrong. Waiting on something like that is nerve wracking. When is your next appointment and will you let us know how it goes?

    Don't give up on your husband's potential to understand and support you more. I think there could be a whole load of obscure reasons why he's not getting it. For example (and I'm just plucking this out of thin air) are you 'the capable one', the partner who is most capable, who always knows what to do, who always organises things? If so, that could be a huge barrier to him accepting that you now need his help.

    I think my husband has always seen me as the weaker one of us or at least the more emotional one. Though heaven knows I worked much longer hours and earned more, back in the day. Anyway, he was happy to be somewhat protective. But, as it happens, the way I've dealt with all the changes in my life has been a real eye-opener for him. There's a new respect, I think.

    I suppose what I'm saying is that things don't always pan out the way we (or our partners) envisage them. He might be fearful of all sorts of things that aren't going to happen. All he needs to do is to make a few more dinners and realise that his wonderful mrs requires some extra love and understanding right now .... and it could all turn out much better than he (or you) fear it might.

  • Hi Postie. My appointment is this Wednesday. The results will tell him or give the indication that it is psoriatic. Last appointment end of Dec he mentioned it would be easier to get biologics with the joint count too.

    My Nurse rang me before the scan. She wants to see me in her clinic to do more counts and she said it will take a while to sort things out and decide which drug. I asked her if she had spoke to the Dr because he was different at the last appointment. She said yes and told him the back involvement and my Sister has psoriasis. He was unaware of this. This Nurse is really good and I wish I could see her each time.

    She did das scores for biologics in Sept and was pushing then but the Dr said not yet. I was suppose to add Arava but this never happened.

    She was going to ring to get me in to do more scores before I have more steroids but it has not happened. I will see what Wednesday brings.

    Yes I am the one that organizes everything. Books the holidays sorts out the dogs vet appointments and holidays, of course the Christmas shopping wrapping and delivering gifts.

    Yes it would be nice sometimes not to have to think what meals we are having and cook them. I suppose you just assume the role and carry on with it.

    I have actually said tonight though if I get depo medrone on Wed, this time I am resting after. He will have to cook his tea and I am not walking the dogs in the day. He will have to do it. He was shocked bless him and said why I don't understand. I explained that if I can rest after an injection it will work better and things will settle quicker, so this time I am doing as I am told. Foot down with a firm hand lol !

    Have told him before but he forgets. I will stick to it this time. This flare has lasted too long.

    I think it will help if I can give him some info to read and 're read.

    You should have seen his face when I tried to show him the metroject pen and how to do mtx injection. He is certainly not ready for that.

    I will keep plodding on with it.

    Your hubby sounds great and supportive.

    I will let you know what happens on Wednesday.

    Thank you again.

  • Hi Moomie.

    I wish I had seen your husband's face! Surely the fact that you have to inject a drug will help him realise that this is a bit more than a 'bad back'!

    Just wondering, did you see the same doctor yesterday as you did in December? It can be a case of chinese whispers when we keep seeing different doctors. I think that usually does make things harder for us unless communication between staff is really good

    How are you today?

  • Postie

    Yes saw the same Dr although youwwouldn't have thought so. He either has a split personality or a twin.

    Still upset confused but stronger. Didn't sleep much too many things going around in my brain.

    Have rang Secretary and asked if I can see Consultant next visit and if she can go through scan. Sounds like my Consultant is on long term leave.

    She checked with Dr I saw about scan. Still not wiser just degeneration he doesn't think surgery needed. She told me he said cannot give steroids because not indicated and infection risk. An I M injection ???.

    Anyway she is going to get me in earlier for knee injected.

    Also said she could arrange for me to see another Dr next appointment.

    May do this. The Nurse wanted that actually in November when he would not send me for x rays.

    Oh well will keep plodding on.

    I have been looking at PSA symptoms again and wrote things down that I can relate to.

    Thank you Postie2

  • Oh moomie, I identify with a lot of that! I got a new diagnosis of PsA a week ago - it's my third diagnosis from the same consultant in 3 months, after about 4 years of problems, so it is very confusing. Each one was a shock of one sort or another, but I think I could get used to even bad news, if it didn't keep changing. What a disappointment for you to hope you'd be given a depo steroid injection, and then to be refused. You must be really fed up. I think I'd take up the nurse's suggestion of seeing another doctor next time... I have just been back to my GP and asked for a referral to a different hospital, which he has done for me.

    I am single so have no husband around to be unsympathetic ;) Seriously, I often think it is worse to be let down by someone who is supposed to support you, than to have no support at all. :( I'm sorry your hubby doesn't 'get it' yet, and I hope he learns soon... I do have two adolescent sons though, 16 and 20, so I know a bit about unhelpful males! I have noticed that they really do not like me being ill - I think it makes them feel scared. And they deal with their fear by going into denial or even by being difficult, because men aren't supposed to show fear, are they?! I know husbands are not teenagers (allegedly! ;) ), but they often seems to have the same fear and reactions...

    I find talking to my boys directly works quite well. Maybe it would work with your hubby too? I say things like "I know you don't like me being ill, and you must be almost as scared as me, but I really need your support right now..." Also, direct requests like "Will you cook tea today please?" and "Will you do X?" work better than hints. That word 'will' seems to go down better than 'can', too; my eldest once said to me angrily "Of course I CAN, are you saying I can't?!" I think 'will' sounds a bit rude to women, but to men it sounds like you're giving them a choice, and of course they WILL, because how mean would they be if they didn't?!

    Hang on in there. Some of us here get what you're going through, so you can rant and get support whenever you need to! :)

  • Thanks flow. I have been following your posts actually, because I can identify with your issues.

    Really pleased you have your diagnosis and are going to get treatment. More so you are dumping your current Rheumy team.

    I would really like to take you to my next appointment to give them a run for their money.

    I find W ritting things down better than expressing myself vocally.

    Yes did try it at one appointment but he would not read it.

    Think that was Sept when he never looked at photos. But I am getting knee injected now. Not long to wait, although next available been told is June 😂.

    Maybe I am wrong but still feel they have missed inflammation in Si joints. It fits and responds so well to steroids.

    Thing is he would have gave me one in Dec. And I am having my knee injected. He wants me to go to pain clinic and have an injection directly in to joint in my spine. Looked into this and yes you have guessed it steroid and local anaesthetic.

    Could not make it up !

    My OH has actually been good this past two days. He had a good talking to by our joint work colleagues. We work as matchday staff at football. Each in charge of a stand. He doesn't know I know that he was taken aside. Anyway he is warming up tea I prepared now after walking the dogs. And sitting with me on the bed watching T.v.

    Did a naughty though last night. It was mtx day. I inject early evening. Got it out and sharps bin and casually did it while he was watching T.v. He didn't squirm or move. I had to smile to myself.

    Well lots of good luck with your new team.

    I am looking and researching now hopefully to get better knowledge and go prepared.

    Thanks again. Moomie

  • Why are you having to prove your condition to someone who loves you? You will be dealing with enough your self both physically and mentally without this added stress which in itself is a trigger for a flair up. His refusal to understand your condition says more about him than he thinks maybe an honest discussion between the two of you needs to happen. Please take care and don't blame yourself for having this disabiltating condition.

  • Thank you Gaelic hare. I was having a really bad day and got frustrated in him and myself. Mutual friends pulled him to one side the following week at the part time job we both do. One of them has an autoimmune disease and is on mtx. He generally asked how I was and said I need a lot of help and support at ths moment , he undersatands what it is like and taking mtx. Told him how lucky he is that his Wife understands and is supportive like my Oh is too me.

    Then apparently the other Men said how is she you had better be looking after her.

    Well I think it sunk in and he has been better. He didn't tell me this but friends ring me.

    I had a bad Rheum appointment Reg didn't explain or examine me. Just told me MRI had shown little inflammation due to degeneration / osteo didn't think it required surgery. Not changing diagnosis to Psa still sero neg inflammatory and not increasing mtx as planned. Asked for a depot medrone because I know this works and he refused. Said I need to go to pain clinic and have an injection in my spine. Did book me in for injection in my knee which has been swollen since last summer . Had 3 depot medrone whi ch did ease pain last year plus oral preds.

    Well that upset me because I am so stiff still unable to sit for long lots of fatigue and generally unwell plus no appetite some days.

    Never examined me oR explained MRI properly.

    Anyway on way out Nurese saw me and said are you struggling again? who have you seen and did he give you an injection. Said no she told me to see G.p.

    Have done that now got 20mg preds back to see him in 3 week. He doesn't agree with pain clinic and was amazed at Reg response. Unfortunately Cons on long term leave. I know I am not going to see him again. Tried usual writting things down and photos but he was not interested.

    Crikey sounds like I am paranoid doesn't it ?

    Not really honest. I have spoke to oh and to be fair to him I have not told him exactly everything I have been feeling. When well, well you know what I mean stable should I say I would rather carry on and pretend nothing is wrong and mull through on bad days. I keep telling him now bits at time so he can process it. Mostly it has sunk in and he is better.

    Well I have gone on a bit I know. Just need someone to talk to who equally understands and not feel like I am moaning or after sympathy.

    Now don't really think actually belong on this site with not having this diagnosis. You are all great people.

    Thank you again.

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