Rant

Waking up all week feeling that the RA is creeping in all over me and the thing I hated the most has started again! Yes beached seal is back as shoulders to fingertips hurt every fibre.

I know MTX was working for me as today proved it but unfortunately the side effects were too much for ME. If I could I would back on it now.

I feel I have regressed back to October last year and with respiratory clinic cancelled and consultation cancelled I can’t see a light.

I get c19 is the thing right now but honestly I hate the fact it is destroying so much more than the illness it gives from people to lives to hardships all over. I try to take some comfort that our planet is recovering a little but my head is ranting.

I know many on here too are going through health issues and we just have to wait................

[Dobcross1]

You are so right, the effects of Covid19 are far reaching across every aspect of our lives, nowhere more than the NHS. I heard 2 heartbreaking stories yesterday regarding patients not being able to access treatment due to the virus. The sense of frustration and anger is consuming most of us - against the virus, not the NHS. Yes, we have to wait, but it doesn't mean we can't quietly rant and rail against it! You're not on your own and you know everyone on here understands - we are with you. So sorry you are suffering at mo the Deeb. Xx

[Summerrain14]

Aww Dee, you rant away as you have every right too. My heart goes out to you being in this position with no RA meds due to complications and everything on hold for you to goodness knows when as you say.

I wish I had something useful I could say, you are very much in my thoughts and really hope that things begin to move for you quickly to get your RA back under control once things begin to settle down with this COVID-19. I can appreciate you may feel very reluctant to contact your rheumy team but I would encourage it if you can as they need to know what is going on for you. Gentle hugs x

[Mmrr in reply to Summerrain14]

Good advice here Deeb, from Summerrain rheumatology is still functioning in Edinburgh, they might be able to offer you something to help.

[Hidden in reply to Mmrr]

I am going to email them normally 5mg of prednisone I am crazy bunny now on 15mg and pain wading through and quiet. Just feel guilty in doing so but another 3 months of no treatment worries me

[sylvi]

Hugs from me darling.xxx

[Hidden in reply to sylvi]

thanks Sylvi

[Pippy25]

I'm sorry to hear you're not feeling good today Dee and think we all realise that while this virus is a priority and needs to be dealt with...and we can't dispute that. Our other health conditions are falling along the wayside and I do worry that with such lifelong conditions, people waiting for operations, to start treatments or have teats etc that once there is some normality restored there is going to be such a deluge of people descending on an already weary, exhausted and stretched NHS. It really is hard and I'm sorry to hear you are suffering. Sending some supportive wishes for you today x

[Hidden]

I HEAR YOU OH BOY DO I HEAR YOU. I thought no work would help...OH NO!! I too am going backwards. Fatigue is controlling my life ankles and feet don’t work and now painful. I think I’m now starting to have a reaction to MTX both last week and this week after injection I have fatigue so bad I barely move and just nods off to sleep for 2 days accompanied by headaches that no painkillers touch. I also take elerzi which started off so well now doesn’t give the relieve it initially did. I need to speak to my nurse but she’s off sick until the 7th and I doubt there’s anything she can do in the present circumstances.like you understand C19 is the bigger issue at the moment but feeling hard done by ... don’t usually feel sorry for myself.

Hope we all get some relief in the coming days . I’ll share the misery with you Dee x

[Hidden in reply to Hidden]

Hidden oh no you were having such a good run but when you said you had slept for 36hrs thought that was not right too. I think trying to get treatment WHEN needed is crucial over and above general checks and we all know our bodies enough to know when what we have is day to day life of RA and then oh no this is not right.

However saying this everyting feels C19 based and a tiny voice keeps aying to me dont speak up they have enough going on.

However I will e mail athought and see what I get back and maybe try GP if no response on Monday.

I refuse to just lie/sit down like a beached seal though, so making sure I go to the garden and drink in frsh air and get the body moving too.

[Hidden in reply to Hidden]

I make myself walk the dog every morning.. God bless her she walks so slowly beside me and when it gets too painful she knows and just stops and looks at me and waits till I get going again. Everything aches at the moment. I’ll email my nurse next week but if I need to see her I won’t go I have to walk through A&E entrance to get to the Rheumy department. Just asking for trouble. My daily arthritis Pilates lasted 2 days 🙄🙄oh well i tried 😁

[JFlay]

I was the same last year 😟 my MTX was stopped due to side effects and a three month gap on nothing but NSAID's and paracetamol. I was crawling up the walls by the time I saw the consultant... horrible.

It's a very stressful time at the moment, it doesn't help any of us 😥 be kind to yourself and take care.

[Hidden in reply to JFlay]

crawling up the walls is an apt description right now thank you.

[JFlay in reply to Hidden]

😥🤗

[charisma]

Dee, so sorry you are in this predicament.. nobody should be left to suffer. I’d guess that email might be ignored ie too busy to look just now.

Perhaps call GP today, be calmly assertive that if this is allowed to continue you won’t be able to move or hold a phone... and uncontrolled RA puts us at high risk if infected by COVID-19; at least that is the current stance by ‘experts’ .

[springcross]

Sorry to hear you're not feeling so good Dee. I agree with charisma about calling your GP today - you might wait a while for the rheumy nurse to get back to you and you need help now. Hoping you feel better very soon. xx