I have just noticed that its 3 years since I posted, and, despite a change in medication, nothing seems to have changed in our house. Now off Cimzia and on Baricitnib (with some improvement at least in his hands), still on MTX - we are still trying to find a better lifestyle to help dearly beloved to manage his pain better... I am going with him to RN appointments and he is being a bit more honest about the reality of things, and has agreed to be more proactive for himself. I feel helpless cos I can’t fix it, and our weekends are his recovery time - we rarely do anything together and he is becoming depressed about it all. Fortunately we have a Rheumy appointment in a couple of weeks and I will encourage him to be open with her again.
Any ideas for other things we can do? Diet? Exercise that doesnt knacker him out? Complementary medicines? Lifestyle changes that have actually worked?
Thanks for listening... sorry to rant...
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HelenDalton
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Oh dear.....that does sound rough not to have found a better combination. First off, although he sounds like a typical ostrich, might he be persuaded to talk to his GP or rheumy about a course of CBT? i.e. talking therapy. It could help him find a way to manage the short straw he’s been given without affecting every bit of your life together. It’s not a weakness to say you are getting depressed with this bloody disease.
Then I would suggest you don’t try to achieve miracles in a day, but maybe look at whether there are lifestyle issues that could help support him mentally and physically. So starting with the basics I presume he doesn’t smoke? That’s a real no-no with RA. Then weight...is in normal band? Again being overweight won’t help and there’s research that says drugs will be less effective. Then sleep, does he get enough as people with RA usually need more than they used to. I managed with 6 hours, and now need 9 to function normally. Then exercise, if he doesn’t do any just a 20 minute walk a day can help hugely if his feet are up for it. And then stress....but if he is also stressed maybe CBT could help with that too.
Only once you’ve ticked off the basics would I personally bother with massive diet changes. I tried a variety of things but have ended up cutting out processed and very fatty foods, and eating more fruit, veg and fish. Works for me...nothing else made much of a difference to the RA.
Thanks so much. Weight is an issue. He doesn’t smoke, but does like a beer or two... and sleep is elusive at best! Cutting out alcohol certainly during the week is a goal, and losing some weight too.... I think its a good idea for him to get some counselling around it all, but baby steps - he needs to work that out for himself really, although I am happy to suggest it (again), Definitely an ostrich... but one that is trying to take a look around before shoving his head back into the sand
Just want to say hello as my hubby has RA not me. He was diagnosed 2 years ago and it certainly hasn't been plain sailing. If you don't think he would warm to the idea of counselling you could ask for some for yourself. (Not CBT which is psycho education). If you have the chance to speak about your worries, frustrations etc you will most likely feel better able to manage the situation. I sympathise.
I understand. Adjusting to life not being as you expected takes some doing even if you aren't the one with the illness.
Unfortunately RA and depression go hand in hand, I think we’ve all been there. My personal opinion is to get his pain under control first and hopefully that will help with his mobility, ( baby steps) being more mobile will help with weight loss.
We have cinema days that include lunch and a drink in a cosy bar near the cinema so not much walking. If your hubby is claiming PIP or other benefits, you can apply for a CEA card at a cost of £6 a year that allows the carer free entry to many cinemas.
Is there anything in particular that hubby would enjoy doing that could be tweaked around his RA?
I take each day as it comes and very rarely plan anything until I’m up and running and have taken my tramadol & paracetamol then I decide what we’ll do for the day be it indoors or out.
Acceptance is a big part of RD, so maybe as others have said, talking it through with someone, a chronic Ill health psychologist perhaps, could bring benefits. But, not everyone responds or will engage with this type of therapy, so don't be too hard/disappointed if your husband refuses this option.
At a more practical level just setting a goal to get out and do something pleasurable for an hour or two each weekend might help ? Something not too onerous?
What did you used to do together before RD struck ?
Visit a friend, or have a friend visit you ?
Go see a film together ?
A short drive to the park/great outdoors and a breath of fresh air, with a short walk ?
Photography ? It gets you out, is not too demanding and with modern technology you get instant results.
Weight control would probably bring benefits too, but it is very hard to do. But eating healthy can bring big benefits, no fads or expensive dietary requirements, just fresh food and portion control.
It sounds as if your husband works fulltime? Is there an option of dropping a day a week to improve the overall quality of life ?
But it does sound as if a drug review is required too. I hope he can be more open at his up and coming appointment. Best wishes.
What about going out for lunch instead of the evening that's what we do as after lunch I am no good for anything. You could surprise him in the morning and tell to get dressed up and take him out for a luncheon and at the moment most places are doing Christmas special so that makes it a bit more special. I understand how your oh feels as I am the one with the disease. Anyway darling that's my idea, in one sense I hope you never have to feel the pain he is in, but I must say your doing your best. If your hubby would like to use your account here he can message me if he wants. Just before I go your doing a fantastic job in supporting him so well done you Helen.xxx
What I have. learned during my 5 years of research is that men seem to react differently to med and diet changes with this illness.They usually actually have an easier time to reach remission. It has been shown that estrogen plays a central role in inflammation. This actually means that the hormonal balance is estrogen/ testesterone balance is estrogen dominant.Yes this can also happen in men and does often happen in middle age men.Also in younger men where diet changes away from estrogen stimulating foods and diets. Paddison diet is one such diet that decreases estrogen.
An other nontoxic med worth trying is in my view LDN. Lots of studies and info on web. I hope your hubby finds relief soon.
It does seem that men do respond better to diet changes going on the anecdotal evidence of people who post here....so no science behind my view at all. But always worth a try to improve your lifestyle, male or female!
The funny thing is that there really seems to be a connection between estrogen and Progesterone/testosterone ratio in inflammatory disease. This I have found in numerous studies. There are many factors of course that needs to interact for RA to break out. To minimize every known inflammation causing that biochemistry shows also has a connection to RA. It’s worth trying. Men that have fat around the waist compared to those that do not, usually have a surplus of estrogen. Things you can do with out meds are always worth trying.
Another very effective vit is D3. It gave me energy, increased my hemoglobin and decreased my CRP. But the benefit is seen first when you reach 150-70 mol.To keep this I had to take 100,000 ou once a month for some time. The so called normal does not help with RA.
Hi Helen , How often do you and your husband go out apart from medical appointments? Being at home in pain and feeling miserable is enough to make anyone depressed not just your husband but you as well. I have and do feel very low at times but just a change of scenery does help to cheer me up even though it is an effort to go out. Socializing, a trip to the cinema, eating out or just a trip to the park is what helps me, I hope this is of interest to you. Wishing you well Carol.
Similar position to your husband. Have used many alternatives to the prescribed stuff. Possibly investigate Mangnesium, Pernaton ( or equivalent ) and Allicin. Google Dr Sircus IMVA and drpaulclayton.co.uk, and perhaps arthritistrust.org. Tell your beloved that it is a right pain in the arse, but the bad bits can be reduced!! I am in a wheelchair now but the condition has been with me rather like the bloke in the bar who always talks about himself.
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