I want to stand in the middle of nowhere and SCREAM u... - NRAS

NRAS

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I want to stand in the middle of nowhere and SCREAM until I’m hoarse

Lauranorder
Lauranorder

I think that would make me feel a lot better.

So my journey started almost a year ago when I went to see my GP and he decided to refer me and see if I had Arthritis. Today at the rheumatology clinic I had it confirmed.... there is no doubt, I have Rheumatoid Arthritis. Although I’ve spent the last year saying I might have it, to have it confirmed has knocked me for six.

The scariest part for me?

My dad had his 1st of 5 heart attacks at 27, 3 strokes and sadly died at 61. I’ve lived in fear of having heart problems myself. Today I was told that I have high blood pressure and also because of RA I run a higher risk than normal of developing cardiovascular disease. So now my fear is VERY real.

I’ll be going back next week to get counselling and to start medication. I have a leaflet telling me about Methotrexate and I need to make the decision whether to have it or not.

I’m rambling, I’m so sorry, my head is all over the place 🤦🏽‍♀️

33 Replies

You have my deepest condolences. I have just started having symptoms (and was in large amounts of pain last night and slept very poorly). I saw the doctor last week - he said I will need to book an x-ray. But at that stage only 1 finger was affected (though both my hands were stiff in the morning). Now the knuckle of finger on the opposing hand appears to be swelling. Things are not looking good - I cannot see any other viable explanation for my symptoms. With regards to blood pressure has anyone tried COQ10?

Hidden
Hidden

I am really sorry to hear of your fear and hope the counselling helps. Its difficult to find a good place to scream unless you live in an isolated spot.. I have always thought there should be a sound proof screaming booth at the end of each road. (There might be a queue issue.) Seriously, I am sure many people on here will say encouraging things about following advice of Rheum. etc. All the very best.

Lauranorder
Lauranorder in reply to Hidden

Thank you Norisa. I’m going out r a scream later today

I'm sorry to hear of your diagnosis, you will find much support here. Be patient. ..methotrexate works well for many people, but it takes a little bit time.

Lauranorder
Lauranorder in reply to Mmrr

Thank you Mmrr. Does Methotrexate seem to be the most common drug used?

Mmrr
Mmrr in reply to Lauranorder

Yes, methotrexate is the 'gold standard' drug. It works for most people, but there are others if it doesn't work for you.

Well you've had a year no doubt trying to squash that evil voice in your head back into a box somewhere in the depths of your mind, and now the lid is truly off the box..... so quite understandable that you want to scream.

This is absolutely the worst and scariest moment. It is truly awful being diagnosed with a chronic disease when you are accustomed to being a normal healthy person. And it takes some getting used to. But you will get there, and chances are it will be totally fine.

I'm 8 years post diagnosis now, and my life is good. My personal experience has been that what has helped most is realising that a lot of this is up to me. So yes, we do have raised cardiovascular risks, but these can be hugely decreased by lifestyle choices. So I'm now a normal weight, eat a good diet, sleep properly, exercise daily ('ish!), drink very little and try to stay stress free.

I also listened to my rheumatologist, and took the drugs. Her view was that the quicker you control the disease the less damage you risk to your joints, and your other organs like heart and lungs. So I worked on lifestyle in parallel with bucket loads of drugs. And methotrexate has been my best friend for 8 years now. It has given me back my normal life.

Thank you helixhelix. I totally hear what you’re saying. It has to start with me being the best that I can be. Luckily I don’t smoke and I only have a glass of red once in a while. I do seriously need to lose weight and try to get more exercise. So that is going to be my focus.

Hi lovely. I no its very scarie at the moment .but we have all been there.i don.t no what i would do without this site. Take a breath .

Ask questions .if you are worried .no matter how silly to you it sounds.if one of the meds don.t suit.tell them .if you want to cry .then cry. If you want to scream .then scream .only people who realize what you are going through will give a dam.others don.t no and don.t care.even family because you can.t see it.and its not like flue. 7-10 days and your fine .

If you have a problem ask here.if you are feeling down .text here.

Some of the worst days i have spent on here.i don.t text every day .or every week but i no if i need to talk .someone is here and we understand.

You will be fine my love.chin up.gentle hugs kathy xx

Lauranorder
Lauranorder in reply to keeta

Thank you keeta. This really is a great place to come. I wish I could have you all round for a glass of juice and a chat (apparently coffee and tea is now out)

keeta
keeta in reply to Lauranorder

That would be lovely.

Take care .

Gentle hugs kathy x

PFKAAde
PFKAAde in reply to Lauranorder

Coffee and tea out? Pah! 😵

I’m guessing you mean the caffeine? Whilst it may not be ‘great’ for you (although there are studies showing a beneficial effect on heart / cardiovascular health from drinking 4 cups of coffee a day), there comes a point IMHO, where you need to allow yourself some little pleasures.

I’ve never stopped drinking coffee or tea (or eating soft cheese, unpasteurised anything etc etc), even when on MTX etc (am on Humira now) and was never told to stop anything (apart from being told of the risks of alcohol + MTX). Even the alcohol advice was along the lines of “it isn’t recommended, but...”. In fact when ever I’ve specifically asked about it I’ve always had the ‘well, it’s not ideal - but a few won’t kill you” type of reposnse, so I’ve never let it bother me.

We are all different in what ‘risks’ we take though, so please take your doctor’s advice and not mine. 😉

☕️ 🍵 ✅

PFKAAde
PFKAAde in reply to PFKAAde

Oh yes, and have you considered pulling into a quite lay-by in your car and letting your frustrations out? Nobody can hear you then!

Lauranorder
Lauranorder in reply to PFKAAde

Funnily enough I did just that driving home. I had Genesis (on the turning away) on VERY LOUD and let rip 😄

SO go scream !!!!! I did. And talked to a counsellor. And talked to nras helpline a lot!! We have a lot of heart attacks in our family and I was petrified. Gp does a yearly cardiovascular check now I have RA so talk to them about it.

Getting the RA controlled will help so have a lost of questions for rheumy.

And " scream" out on here. We've all been there. But there's light at the end of the tunnel there are plenty of new drugs and biologics now available that my family didn't get !

Lauranorder
Lauranorder in reply to allanah

Allanah thank you. I really needed someone with a family history of heart problems to say something. Has your fear lessened with time and the regular checks? How long have you had RA and has there been any changes in regard to your heart at all? ❤️

allanah
allanah in reply to Lauranorder

I feel so lucky that wechavectreatment my dad and 8 cousins only had aspirin! I do get a yearly cvd check from my GP which was fine apart from I have atrial fibrillation and my cholesterol is getting high due to tcz. Under treatment for both and they are ok just now.

I still do worry but as my RA got more controlled I worried less I think. But I'm always glad for my yearly check up!

Hidden
Hidden

Mmmm, I hear what you’re saying, I’m sort of in the same boat. I found it difficult to go from suspecting that RA is the problem to the reality it actually was. Screaming is highly recommended, as is counselling. The others have provided excellent replies too, wish you all the best and don’t be a stranger if you feel like a rant, we’ve all been there, cheers Deb :)

Lauranorder
Lauranorder in reply to Hidden

Thank you YanniBaci. I really thought I had become accustomed to the idea, but the reality was much harder than I expected. In the surgery I was calmness itself, but once in my car I sobbed my heart out. Today I feel a little bit numb, I still intend to find a good spot and SCREAM

It really is a shock to receive your diagnosis, the realisation takes a while to sink in and come to terms with and you will do that! It takes a while to process the news.

I’ve taken methotrexate and a few other drugs over the 20 years since diagnosis and they have really helped!!

As others have said it’s looking after yourself and making all those good health choices your going to make now.

Counselling is a great start .....the very best of luck to you. Sending a huge hug.

Lauranorder
Lauranorder in reply to Pastels

Thank you Pastels. Hearing people say things like “20 years” really helps. Right now I feel like my death warrant has been signed, sealed and delivered.

Mummyola
Mummyola in reply to Lauranorder

Methotrexate has helped me tremendously, so if your offered it my advise take it, and see. Don’t ever give up, life is to precious, my inspiration came from my Aunt who was born with Rh, she went on to have two children and died at the age of 85, yes I’d like to live longer than that, wouldn’t we. All but I thought it’s quite an age to get to, and she had all her faculties got around fine.She just went to bed one night and my Uncle found her dead in the morning. Dr said she just pasted peacefully her heart just stopped, no sign of heart attack in the post mortem

Pastels
Pastels in reply to Lauranorder

I know it’s the pits just now....and it will change nothing surer than that, we just don’t know how quickly yet. You will learn to pace yourself (sometimes).

I managed to bring up two kids they are 31 and 27 now. I’m up in Yorkshire looking after a puppy at the moment. Pacing myself😉

allanah
allanah in reply to Lauranorder

No Laura. I've been RA since 2011. At the beginning it's so hard. But when they get you controlled you will feel so much better. Hang on in there.

Oh and nothing wrong with a good scream ....!!

Lauranorder
Lauranorder in reply to Pastels

😁

Hi ya... hope ur ok ..its very daunting news to get told that .....I was in your position 20 years ago n for diagnosed with psoriatic arthritis so was head to toe in skin rash n bones all over body aching. Not nice when only 29 .... I thought I was going to be in this pain til I was older ..but was out on sulphasalizine tabs which after bout 2 months noticed a huge difference in pain and skin. I then went into METOJECT. .. injectable methotrexate ...was on that for day 5 years no pain whatsoever n not a spot of psoriasis on me .. so don't fret too much as there are loads o drugs out there that'll do the trick if your arthritis get any worse. Hope this helps x

Thank you Phyllis44. I’m definitely learning that it’s trial and error and the health workers keep going to get it right for you.

Can I come with you to this field, not a high cliff at moment as I feel I might jump off. I feel I could scream until my voice has gone with a sore throat to boot. I was meant to have a hospital appointment to have this pot taken off of my broken leg. I booked for a two man crew ambulance service to get me to the hospital, they sent me one man. No he can’t take me. Phone the ambulance office to complain, to book a same day appointment call the hospital they will do it for you. After four phone calls back and fourth no luck. Each sending me back to the other. Now I’m to late for appointment no one can see me today. Next appointment is 2nd October. I’m fuming now plus disappointed. So you can see why I want to join you. I can understand your plight as my Dad died at 67 with heart trouble and he had had Three strokes one they revived him twice from. I not only have Rh but diabetes, so fear of having Cardo is on my mind, and being caused stress doesn’t help. Sorry to go on it was not meant for you all of this. I just want that field.

I could tell you a very similar story (brother was stroke victim rather than father, but otherwise).

Anyway, I finally got to a place where I realised that being diagnosed with psoriatic arthritis could actually be a blessing as I would never be this closely monitored and well looked after otherwise. Thereby reducing the likelihood of heart attack/stroke.

Took me a while, but I'm 2 years down the line now and my biggest complaint is that my golf isn't as good as it used to be. But I have the perfect excuse haha.

Let them prescribe whatever they need to get your ra and bp under control and you will start to feel a whole lot better about everything. It just takes a bit of time x

Thank you MagsLough. I’m sorry to hear about your brother but what you’re saying is actually very comforting. I hadn’t thought of it from that angle. I’m going to be getting regular 1st class healthcare aren’t I 😊👍

Screaming is a good way to let it out.

Sorry to hear your diagnosis, it’s all very scary really. Mtx seems the first drug prescribed along with a steroid, neither have worked for me. I was diagnosed in July, bloods CRP came down to 16 from 150, now it’s back up to 100. Scares me I tell you. Meds haven’t made a difference to my knees or other joints, some days or worse than others. Just been taken Off Mtx and put on Arava, lefluimide? . See what happens.

I hope you work it out. My mum had RA. For about 20 yrs, very disabled and crippled and never left the house really after dad died. I am in denial that this is what I have, as I’ve been told inflammatory arthritis. I don’t have sore fingers or toes or typical RA symptoms. I don’t know what mums inflammation levels were but aren’t they the indicator markers for heart attack and stroke? Her BP was low.

I guess you have to be guided by your doctors, research independently and be accepting to try things. All the very best with this hideous disease.

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