Always wondering...

[Amhoarten]

I'm going to ramble so I apologise now.

I got diagnosed in April. Since then I was started on mtx, then taken off it as Symptons settled and it was giving me side affects (rheumy suggested we see if lid had been put on it) pain inevitably returned.

Each day something else hurts, my legs feel like I've run a marathon always. I ache so much. I am finding myself wanting to sleep more and more. I actually have noticed I'm avoiding doing much at all. I do the minimum I need. I work hard as a nursing auxiliary in an A&E department. 12 hour shifts are doing me in so looks like I need to move in the hospital. I only got that job in March. I was so excited. It's a great job but I'm not going to keep it up. I've already needed time off because of jaw pain and knee pain.

My fingers hurt today. The tendons mainly. My hips and knees hurt too but there's always one bit of me hurting more.

I can feel myself getting down about it. I suppose it's because I'm not being controlled at the moment. This is going to be my 5th week back on mtx. Can't see an improvement yet. The depo shot I was given the other week didn't help either. That worked like a wonders last time I had one.

Getting fed up of my day revolving around what I feel like doing and what I can do. Knowing if I do some things I will end up I serious pain after.

I see my consultant on the 24th. Meanwhile I have to see Occupational Health because of the time off I've had (three days in total). Already messed my new job up. Annoying thing is I've never actually been one to take time off sick. They won't know that though as not been there long.

Had a thought I might like to go horse riding as a treat but then thought nope my hips won't cope.

Tin man with no oil that's me except I'm not a man

I know there are plenty worse off than me, in more pain and have a quality of life less than me but I suppose I'm just feeling sorry for myself and trying to come to terms with all of this. No one really understands, except all of you of course.

I'm 44 and thought now my kids were grown up I could do whatever. Now I go to bed wondering what will hurt tomorrow and will my plans be affected.

Oh dear I have rambled. If you got to the bottom of this post then thank you for reading.

I hope you all are having a pain free weekend.

Night all xx

[Amy_Lee]

Oh dear Amhoarten,

If you can sleep well do try to take a good night sleep. I used to have sleepless night because of the pain on my body during the peak of my suffering.

I am surprised that your rheumatologist did stop you from continuing mtx after such a short time? Was the side effect serious? Did he or she gave you alternative drug after he or she told you to stop mxt?

RA is a long fight for us, no way we could stop the drug after merely a few months unless it is not a RA case.

When I started mtx, I did have little side effects like hair lost, rashes on my hands, vomitting, diarrhea and vision getting a bit blur. I told my doctor when I saw her. She told me that the benefits that mtx would bring me were very much more important than these side effects hence I must continue taking mtx. The side effects slowly stopped after a few months except my vision is still a bit blur until today. Now I cannot read clearly without my glasses on.

Just come in to tell us your feeling if you need to, we can certainly understand how you suffer and will be here to listen to you.

Take good care.

[Amhoarten in reply to Amy_Lee]

Amy-Lee thank you for reading. I was shocked the rheumatologist stopped my meds. I started on mtx tablets, they gave me upset tum so went on injection. They told me to up my folic acid due to the tiredness. When I went to see him he said well you have no pain, no swelling, all looks good and as your feeling bad we could try stopping meds and see what happens. He said if I flared bad the depo jab thing worked before so will be an immediate option. I was shocked at what he said but he's the consultant. I went away happy. I suppose I was feeling good and certainly hadn't accepted I had RA. I'm still struggling with that now.

So 6wks after stopping all meds the Symptons retuned. I don't have the swelling like I had when initially diagnosed but the number of joints and the pain is worse. I've discovered it's the folic acid that upsets me which is unusual so dropped that back down to once a week and I take that with a big glass of milk. So far no other side affects, apart from tiredness but that could be the RA anyway.

I see him in a couple of weeks and I am assuming I will be getting more drugs added in. That was the initial plan. Mtx then two more. I have no idea why he went off the original plan. At least we know now I suppose.

Thank you again and you take care too.

[Amy_Lee in reply to Amhoarten]

Dear Amhoarten,

Yes, fatigue and tiredness are the effects of RA too. I was very tired too and always fell into sleep in the office. I have very good employer and colleagues hence I just rest when I felt tired.

Please watch the two great videos for more understanding and be treated early aggressively to avoid any damage to your joints.

healthunlocked.com/ra-warri...

[Caspiana]

Hello. I'm sorry things are so hard for you. I was diagnosed with RA right years ago. Then almost two years ago I was diagnosed with Bronchiolitis Obliterans (lung disease) manifestation of RA. I stopped worked two years ago, no longer able to manage.

When I got RA I didn't really want anyone to know. But like you, it started to get difficult at work. I decided to talk to my supervisor. I was surprised that it went better than I thought it would. I think bottling up the fact that we suffer from this chronic illness, will cause a lot of stress in the end.

It's really important that you are kind to yourself. Pushing yourself rarely helps. It sounds like you need to have a chat with your consultant and do something about your meds. It takes time.

Take it easy.

Cas xx 😁🌸

[sylvi]

Oh darling you really are suffering aren't you. I fel for you as i assume your working in the nhs and i know they are not very sympathetic to people taking time of because their ill. I know you would think they would be seeing as they deal with illnesses all the time. They are terrible employers for people like yourself. I am sending you oodles of hugs and i hope you get the help you need.xxxxx

[Amhoarten in reply to sylvi]

Thanks Sylvi, yes I work for NHs. I have had lots of talks with them already. Little things like not putting me on stretches of three nights in a row. I can't do nights like that. I was told to go to the rota and request shifts so I basically space it all out myself. I did that. Looked the other day and all my requests had been declined. I'm trying to sort things so that I put the least amount of pressure on my body to reduce chance of me needing time off.

Anyway I'm hoping that actually the Occupational Health people will be on my side and put in writing a plan.

Thanks for listening xx

[oldtimer]

Do have a look on the NRAS site for some information. We have all been in that awful baffled dispiriting place of being thrown back from our expectations and hopes.

You need to know more about your treatment options. MTX isn't the only treatment, although it is the one used most commonly at present in early RD.

You need to know more about your rights to adaptations at work to enable you to do your job.

Knowledge is power. It helps you to climb out of that nasty dip in our life pathway and up towards where we want to be.

[orchidcass]

Aww bless you, you go on and ramble away you are in the right place to do so! It all gets so muddled and magnified when struggling with constant debilitating pain. It's a difficult disease to come to terms with. I hope your Rheumatology consultant gets you on something that helps you soon x

[andyswarbs]

The ups and downs of arthritis are as debilitating as the fatigue, pain etc. I find regular doses of anything very high in antioxidants eg kiwi fruit can help reduce the downs.

[cathie]

I was on mtx for several years and then had dodgy liver results so i was taken off it immediately. No tapering just stop. It's been disastrous no biologic really gets me back to where I was. So I found a more cautious doctor who is considering putting me back on it. Could you consider something similar?

And while a good nights sleep works wonders, being able to pace yourself at work should make a difference. I'm sure that night shifts would be very hard. I think NRAS would be able to give good advice based on experience to negotiate better work conditions.

I hope you get somewhere!

[Iamrosey2]

Hi! Pain stinks! I can't believe you do the work you do! Thank you! If this helps even one person... I just discovered SOY SAUCE was giving me much pain recently...I cut it out and immediately my big pains left..back to just one stiff knuckle in the morning😃

[medway-lady]

Talk to the consultant about changing medication, there is more than MTX. I had hair issues so was changed to Leflodamide, its great for me. I'm in remission but I'm not saying the same may happen to you but its worth asking about trying something else. If you work in a hospital can't you chat to the RA nurse and get an appt to see your consultant asap. Do please not give up and just resign yourself to a lifetime of pain as for a lot of us the meds work and work well thus life is actually normal.

[Doe27]

Doe27

Rambling and feeling sorry for Yourself!

I've been there and I'm sure plenty of others could say the same. The great thing about this site is being able to share and know some one understands.

I'm in NHS as well half pay looming, hopeing I can get back to maintain full wage. Trying not to think of the early mornings and fighting to get dressed, and also manage a full working day.

And I only have 8 hour shifts not 12 to get through

I think of a blogger who mentioned having a baby to care for, if she reads this, still thinking of you and your little one.

[JeffG]

Your post echoes my feelings in so many ways. Huge hugs to you. I am 40. I used to run marathons (Jeff Garney...look me up for proof). I am a shadow of what I was. I just want to finish med school and provide for my family. I don't know what to do either. But, I am thankful for people like you who put your feelings out there, so that people like me don't feel completely alone. God bless.

[Amhoarten in reply to JeffG]

Wow Jeff I looked you up (not for proof I was just interested). Thank you for replying. I'm someone who doesn't complain and I get on with things. This however has changed me into someone I don't like. I'm a hard worker who likes to do what I can for people and yet that's being taken away. Hopefully meds will get it under control.

Sounds like your very much the same. Sucks doesn't it.

Thankfully in cyber world none of us are alone.

Take care.

[Hidden]

I do hope you had a comfortable weekend .

I totally know we're you are coming from with your job concerns . I am 57 years old and recently retired due to ill health issues . I was a senior nurse practitioner working in a busy GP surgery full time , 7.30 till 7pm , 5 days a week , and one evening a week would run a family planning clinic . I was diagnosed RA four years ago . I too felt that some mornings I could hardly get up out of bed , joint pain , muscle aches and so fatigued . I used to cycle to work , along the coast , loving the sea breeze and sunshine , but it was such an effort I was exhausted before I started my shift . I worked through the treatment options of MTX and steroids , but side effects , nausea , dizziness , dry mouth , headache was effecting my professional practice , I found that I could not give my best , listening to patients on their bad days when I was feeling pretty grotty I was concerned that I was not performing my best , to do no harm to others !!! So sadly I took the painful decision to submit my registration ! I started my training at age 18 years hardly ever had time off , 3 weeks off to have tonsils out when I was 21 years old , I had two children , returning to duty 6 weeks after each birth ( we had too in those days 30 years ago ) I worked in A&E them days ! Full time !! So retiring last year due to ill health was the hardest thing I have ever done !!! I so miss my job as I loved it , and worked as a volunteer for rescue international , but just couldn't do my job to the best ability . The NHS early retirement pension is chronic !!! There was no offer of another doable post for me as I worked in General practice and not hospital setting , so all my knowledge and experience waisted ! So please look for something you can manage , perhaps change of hours at busy times say starting at 10 am to 4 pm without causing you too much discomfort , yet still making you feel wanted and useful . Or ask to work in outpatients clinic , no night shifts !!!! You are worth so much more .