Hi my names martin. I suffer from viral arthritis. I have had it for 9 years know I am 35.
I have taken loads of drugs but I am embrel know.
I mainly get it in my hands and feet, however today I have it in my hip!
Not sure what i want out of posting on here. I suffer rom depression as well expect that's pretty common?
I also worry about the amount of pain drugs I take, I take 10 ish of codeine and tramadol I seems to have little effect these days. I something's take four in one go just to try and get some relief at. Night so I can sleep
Anyway I am very lucky as my wife is great looking after the kids, I do feel like a burden though.
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Larrythelathe
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Hiya Martin. Well I don't know what you will get but I can tell you I get support, understanding and friendship. This is also better with adding information and advice too. I now don't feel so isolated and I know when I want yo get help, complain, moan on or laugh the people on here are so lovely.
My family are great too but sometimes the people on here get it, they understand the pain and fatigue that I do believe unless you have it , it is difficult yo know even if they empathise.
Do go on the nras site on nras.org.uk if you haven't already , loads of help and conferences etc where you can meet and talk to others and get any help you want.
I have had RA since 2011 and at that time I was stuck at home and feeling alone. When I found HU it really gave me back some of my feeling of not bring alone and that others understood. I also got depressed but got help through some counselling, I resisted but now would recommend it.
Just chat or ask questions !! Hope you manage yo join in as you already have a lot of experience with how you got your RA and you will have gone through dmards and now your experiences of biologicals will help others. Axx
Hi manage to keep working, it's not easy though. I wonder if people feel the injected drugs wear off a few days before you re-do it?
I am interested in seeing how other people deal with it. I am going to a pain management clinic in June, I suspect this will be a therapy rather than chemical.
I think the worse part is the tiredness I don't think people understand how much it takes out of you! Oh well lucky them!
My husband attends a pain clinic & has a nurse independent prescriber who prescribes his meds. His condition is such that he's unable to have any manipulation or physiotherapy though. I guess it depends on each condition whether they consider physio or other therapies which may help or if other drugs are necessary aside from the ones your consultant has prescribed.
I agree, the fatigue is so wearing & I'll never understand the feeling of being so tired on waking after sleeping all night on the odd occasion I get a full nights rest.
I work full time as well and I agree the tiredness and fatigue is just so hard. I drag myself around most days and then collapse in front of the TV most evenings. I won't let this my RA stop me x
Welcome to this great site & hope you'll find it a useful, helpful & friendly community. I have to admit I'd never heard of viral arthritis before but guess you have it as a result of another illness. Anyway, you'll find us an amiable lot, there's always someone here to offer our different perspectives on whatever subject. We support one another, share experiences, lighten the gloom sometimes by posting off topic subjects & have a giggle and empathise with one another as we're the only ones who know how each of us feel, how we cope with daily struggles & always willing to lend an ear if you just want to let off steam or have a moan. We've all been there. I'm sure you're wife is a great support but she maybe feels unable to totally understand how you feel sometimes as she's unable to feel it herself. I know my husband sometimes says he wishes he could take the pain when I'm having a bad flare.
Anyway, hopefully you find you get the support you need & feel a little less isolated. Just pop on here whenever you either feel the need or have something to share.
Hi Larrie, welcome to the site. We all try to help each other so you are not alone at all. I am a bit worried at the amount of codeine etc you are taking particularly as it is habit forming. Have you spoken to your GP about it? He/She may be able to put you onto a different drug which is more effective and you won't need to take so much.
You talk about injected drugs - I assume you mean the Enbrel or are you on anything else like Methotrexate? I used to be on Enbrel until a couple of months ago and did find that when I was due for the next injection, it did seem to wear off. I believe it is not supposed to so perhaps it was all in my mind!
I have just completed two infusions of Rituximab in place of methotrexate (which I can no longer have due to side effects) and the enbrel. But I do take Nurofen Gel capsules which I find works for pain and stiffness in my hands.
Please don't think you are a burden to your family. Arthritis is not something you can avoid having. It strikes at any age and a friend of mine, her grand daughter developed it age 7. I have had RA since 2008 and only recently discovered it is in both sides of my family. My mother's sister and my father's brother. So it was odds on I would get it.
I also worked full time as a very busy lawyer but some days it was a real effort to keep going. I now work part time and do find that by the end of the day I am pretty exhausted. That is one of the things about arthritis - you end up beyond exhaustion and so tired. Going to bed an hour earlier doesn't help as it is a different sort of tiredness. It is really bone wearying. Get as much rest as you can and try not to push yourself too hard.
Do talk to your wife (I am sure you do) about how you are feeling. My husband is very supportive and understands when I am in pain and just have to rest. NRAS do some wonderful booklets which do help and you can get one for your employer as well. Arthritis comes under the Equality Act so you cannot be discriminated against because you have it and employers are required to make reasonable adjustments to help with your working life. If they can't do so (perhaps because of the type of work) then health retirement is an option but not at your age I should think. Have you considered applying for a PIP? (took the place of Disability Living Allowance). It may be worth looking at- CAB have information about it and can help with the forms.
I am new to this site and it is great to know that how I feel it what is to be expected of RA. I am feeling so ill on Methotrexate and I dread Friday and the next twenty four hours after I have taken it. The consultant would not take me off of it as she said it works well with the Enbrel. I got her to reduce the dose though as it is hard to get through the days as it is without feeling worse on Methotrexate days. I never talk to anyone about my condition because I don't want to bother family friends with my moans so I am so pleased to have found this site and see that I am not alone anymore. I have slowed down so much and the fatigue is dreadful but I still work full time even though I struggle because it keeps me sane. Lovely to be able to put how I feel out there. Xx
Hi there. Sorry you are feeling so rough. MTX is one of the very best drugs for RA coupled with anti TNF such as Enbrel. The sickness can be controlled and your GP can prescribe an anti sickness tablet which does help. Are you on the tablets or injections? I found when on the tablets that it was better if I spaced them out through the day rather than taking them in one lump. I did find the injections did not have quite the same side effects. If you are on the tablets may be worth talking to your consultant about switching to injections.
Do feel you can talk to family and friends. It is not moan ing - it is support for you which you badly need. The fatigue I agree is something else and it never seems to go away.
Have you considered cutting your hours down a bit and does your employer know you have RA?
You come under the Equality Act with RA which obliges an employer (if [possible) to do everything to make your life a little easier, cutting down hours, special chair, foot rests, wrist rests etc, no heavy lifting. You can get some very helpful booklets for your employer from NRAS
which explains about RA and the effect it has on the body. ALso you can get a booklet for your family which explains how you feel and the side effects of RA. It would be worth getting some (they can be ordered on line) and having a read through.
Don't forget your GP is also the first line of defence when you are feeling rough - they do understand. I have a brilliant GP who swings into action the moment I contact to say I am in a flare. I have also found that paracetemol and nurofen is helpful when in pain and joints are inflamed (I use the gel capsules of Nurofen to protect my stomach). This was recommended by my consultant.
Do let us know how you get on and keep in touch on this site. There is a lot of help and support out there but your family does need to know how you feel as they need to be able to help you and take some of the burden off you when you feel ill.
Thank you for your response. I am on tablets I was on 20mg now just reducing to 15 because of the side effects. My work base dose know about my condition I was off several months in 2011 because of the flare ups and fatigue and then I had two total hip replacements in 7 months so was off again for that. I have a new Gp as I have just moved and have not met her yet but I am going for a Meds review in two weeks. As my manager said to me in supervision last week I never complain I just get on with it and that is how I have always been cannot see me changing now. I will talk to the Gp about your recommendations when I see her thank you very much. Delia. Xx
Hi I know what you mean about feeling better for having a good moan.
Fatigue sucks I really don't think people understand what it's like. I am normally completely done by Friday. This week I came in from work and went to been at 4pm and got up the next day at 11. To be honest I could of stayed all day.
I suspect a element of hiding from the day to day pain.
My hip is less swollen and I got on my turbo trainer this week. Exercise is the best antidepressant I reckon.
My codeine usage is high and I am fully aware I have devolved a habit. I hoping the pain clinic will help me adress this. Unfortunately my GP (she's great very much my type of person straight to the point) has been off sick for a month or so and I don't fancey educating another GP if that makes sense.
I do talk to my wife about it, I can't help think she would be better off if I was not around. Not that she would agree with that. She is aware of my depression as my good GP rang her and told her she considered me a high risk.
I very much doubt I will get any benefit as I earn well. I support our whole house as my wife looks after the kids and does the domestics so all I have to do is work. I am lucky in that I am senior manager and don't spend much time on my feet anymore.
I must admit being the soul income does concern me.
I am convinced the embrel does wear off.
I feel much better than I did yesterday my hip joint is still swallow but is not hurting so much.
Hi Martin, hope the pain clinic comes up with something for you. Do try to get plenty of rest as well. PIPs are not means tested so you don't need to worry on that score. It all helps with finances at what is a difficult time. I am sorry to see you are so depressed. Believe me your wife would not be better off without you - she would be horrified that you were thinking along those lines.
As you sit at a desk (I assume), you can ask your employers to provide a foot rest for you and a chair which rises and has arms to help you get up. If you use a computer, they can supply a wrist rest too as well as a special mouse.
Very glad you are feeling better. I occasionally get aches and pains in my right hip but x rays have ruled out any problems there.
Just to let you know PIP isn't means tested. So Lavendar's suggestion may be worth following up. It's not a quick process but every little helps.
When you attend the pain clinic be totally honest with your drug intake. Start a little diary & make a note of what you've taken each day leading up to your appointment. Recognising you have become dependent is good but the more you take them the less effective they'll be & I'm concerned about the unseen damage you may be doing. They will probably offer alternative solutions for your sleep problems.
And remember, any time you're feeling at the end of your tether we're always here if you don't feel you can talk to anyone else or don't want to worry your wife with your troubles. Please don't feel isolated, it will exacerbate how you're feeling.
PIP (personal independence payment) is not means tested and is more based on what you are able/unable to do and also takes into account mental health. I only filled the forms in the other day so have no experience of what happens next. You can get help with the forms from Citizen Advice or the Department for Works and Pensions - the main thing is making sure you put plenty of details about how you manage the tasks that they ask about. For me it was suggested that when you say you struggle to get on or off the toilet but you have not got an frame thing (cannot think of name) - you need to add that you use a radiator/sink to help. I have put off applying for a long time but the effect on the family and our finances through my needing extra items to help me has finally prompted me to apply. You also may need to be re-assessed by your rheumatologist as to whether your drug treatment needs changing/adjusting. I have in the past felt that the medicine is not covering until the next injection time. Farm
Hi Farm, I am still on DLA rather than PIP. We had to have our toilet in the bathroom raised up on a plinth as I was so sick of the toilet frame which of course, everyone had to use when they came. In the downstairs loo because it was cemented in, it couldn't be raised - we ditched the toilet frame and bought a 4 inch high loo seat which fits over the top of the existing one and no one minds using that.
I know PIPs can take a long time so there is a need to be patient once the forms have gone in. You have to use a worst case scenario when filling in any of these forms as RA is so unpredictable virtually from day to day.
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