Hi,
Think I've been reading too much into RA, Google website reading is so scary! Shortened life span due to organ failure etc ete! Suppose only being recently diagnosed and have as yet not seen my consultant, I'm over thinking too much!! But obviously it must be normal to go through mixed emotions with this horrible disease. Trying not to panic!!
Hello jaxine
I can well understand your panic. RA a is a very complex disease in many ways and has actually over 200 variations. There are also many ways to help living with the disease. It will take time to understand and how to treat your perticular form of RA. It is impossible to sort out all the information google gives you and see it in relation to your situation so take one step at a time. This is a good forum to ventilate your thoughts and feelings and hear about the experiences of others but also always keep in mind that your situation and your RA is unique. What has worked for some one may not work for you and the other way around. What I have found to be the most important is learning to listen to your body and gathering as much objective info about treatments and the effect of meds. I wish you all the luck on your journey. x Simba
I was banned from Goggle as do remember people who are doing well do not post. Your mindset plays a hugh part with disease. I believe everyone has something it is how you deal with it. Don't speculate with your life with the ’what if’s’ as we really don't know what could evolve, try and work with the here and now. Stay blessed. -Hessie x
You must not let having RA define you....it could disappear tomorrow!
Some suffer much more than others & unfortunately nobody has a crystal ball to know where you are going to fit on the spectrum.
I have always been of the mindset it will be better tomorrow...which never comes of course ...but being optimistic is the only way to look at how things will work out .
Don't panic!
With the new drugs that we are all lucky to have and the follow up from our docs we are all in such a better place than say my dad! My dad and uncles had aspirin to help full stop!
So of course the problems for them with nothing to prevent joint damage and no regular checks on for example their hearts ( you know your gp should do a yearly cvd check?) were bigger nd more dangerous I think.
We also have healthier food these days available so personally I think we are lucky!
Yes it's a nasty disease but at least with the help of charities like NRAS there is always research and advances being made!!!
What is a cvd check?
Cardio vascular disease. We should be offered an annual check.
As above. My gp checks my heart and circulation such as blood pressure each year x
Nope, only twice in 6ys. Once with the Rheumy blood pressure taken & once with a GP.
I would ask for bp test. Mine was fine when diagnosed 3 years ago but rocketed with steroids and meds so now taking bp tablets to reduce it, plus diet changes etc... I only found out by accident otherwise I may never have known.
I've never had anything had a BP taken by pharmacy for repeat prescription review but nothing else . I think a lot is meant to get picked up on the mot checks they send out to everyone between 48 - 75 . Happy days . Lovely Sunday everyone 🤗
Just noticed this post.
I agree. I've never been offered a single check-up or have my cholesterol tested since having a mild heart attack getting on 15 years ago. During that time I have requested to have the latter checked, but only a couple of times.
Anyway, my above response is not why I'm posting...
helix, do you know what type of heart attack anti-inflammatories cause? Does it have different aspects or symptoms to other types of heart attacks, not sure how many there are(?) Let's say a heart attack caused by RA inflammation for one? Think I've already mentioned it in this thread, plus in a couple of old posts of mine, so you're probably aware of my suspicions that my heart attack may have been due to the infamous Vioxx and Diclofenic I was taking around that time. Not only those two, but I was on Ibuprofen for a couple of months prior to starting the them. As there was no obvious cause I did ask a couple of doctors if my heart problem could have been due to anti-inflammatories but never had a definitive answer. Not sure if they did not know back then, or perhaps more likely, did not want to commit themselves, which I can understand.
I'm just curious.
Basically there are quite a number of reasons why your heart suddenly lacks blood, and has an attack. A cardiologist will be able to look at the readings of a patient and know what type of heart attack it is, ie which artery has been blocked, how badly, what bit of heart muscle is damaged and so on. And then be able to have an idea of the cause. But I don't think you can tell much from symptoms.
And nobody is quite sure yet where the risk from these types of NSAIDs lies. Current theory is that cox-2 enzymes line blood vessels and churns out a molecule called prostocyclin which helps the blood vessels stay relaxed. So if you take a cox-2 inhibitor like celebrex then it could reduce these molecules at a moment when you need them. But whether it's possible to determine whether a blood vessel has been blocked by plaque or narrowed due to lack of enzymes is a question I'm not sure can be answered.
But if you've had a heart attack, even a mild one, you should be nagging at your GP to check you regularly. Especially if you were not told much at the time about preventing future attacks.
Thanks for taking the time to explain.
I was told that I'd had a myocardial infarction and according to an ultrasound scan taken a day or two later it left a small amount of scarring on my heart. Oddly, approx 3 years ago, I had a longer more thorough ultrasound with what looked like a far more high tech scanner to see if there was any signs of infection on my heart when I had sepsis a few years ago. The radiologist reckoned that if I had not told her about the heart attack then she would never have known, and could detect no sign of scarring. I presume it must have healed, which is something I thought not possible.
Anyway, to cut a long story short, the reason for my querying is because I saw the rheumy nurse last thursday and mentioned some slight prolonged discomfort in the region of my upper breastbone, which I've been having for a couple of weeks and she advised me to see my GP. She was not very happy, understandably, that I stopped taking my daily aspirin a few months ago because of acid reflux issues. Can't say I blame her, as it's certainly not a clever move, and I wasn't very happy about doing it myself. That said, there's a bit more involved than what I've posted here. Enough to say that I'll be seeing my GP on tuesday.
Thanks again helix.
Hiya Jaxine,
Very good advice from Simba.
Can only reinforce what she has said re this forum really. In my own experience, I also panicked. I was diagnosed with sero positive RA and Fibromyalgia almost 3 years ago. I was a very fit, active woman. I was in shock with my diagnosis and my head was in turmoil overthinking the future. Forward to today. Much calmer, more accepting of my condition and more knowledgeable in how it generally presents itself and what we can do to help ourselves. There are folks on this forum who have had RA since childhood therefore lived it long and everyday. I place my trust on real people rather than random Google. Be careful of that.
Any questions, concerns, anything, please create a thread and lots of people will try to help.
Take care - Suzie xx
Hi Jaxine I think we’ve all been in your position when we started our RA journey and as others have said we’re all different with some overlapping things happening to our bodies but you will soon get into the swing off things regarding your treatment and the helpline on here is great, I struggled for the 1 year to come to terms with my RA having to retire medically at 51, but I’m in a good place now and determined not to let RA run my life and try to stay away from DR google as it just makes you more worried about things good luck we’re all here for you xxx
I agree with all that has been said. We understand. Google can be helpful, but also can cause great anguish and I would recommend cutting right back from using it just at the moment for you. I self regulated once I started to read things that caused me to be anxious. There is excellent information on the NRAS site. I wish you all the best. Keep in touch dear lady.
To counter doctor google, just bear in mind that we are all here, living our lives and managing. Hundreds and thousands of us. Telling jokes, swapping stories, going for walks, bringing up children, going to work and basically just getting on with it.
Yes this forum has proportionally more people with the most difficult and resistant disease, but that because many of the newbies need us for a year or so - and then like injured animals in a santuary they become better, so are released back into the wild and vanish from view.
Well as asocial worker/ trainee psychotherapist and counsellor I've spent years helping, supporting and ultimately trying to help people live more happier fulfilled lives. This is new experience for me I'm grappling with a plethora of information about RA. Every bit of advice and support means alot to me I'm now on the other side of the fence! So ( to be positive) when! I get better, I will continue to use this forum and hopefully be able to provide advice and support to those in the future.
Hello, when I was first diagnosed with RA 18years ago I read everything under the sun. The shortening of life by 10yrs was something I always thought was a really ridiculous statement by a specialist. 10years off what?, who knows. So if I lived till I was 80 and should have lived till 90, what the heck! I would be happy with 80. There are lots of conflicting statements by lots of people. Some specialists believe in certain treatment some don't. We are guided by what they tell us If something suits you that's good, if it doesn't speak up. I am constantly being offered anti depressants to help control pain I constantly refuse. Only a mild dose I know but I don't want to go down that route. I would rather take extra pain killers. So don't panic and trust your own judgement with the help of a good Rheumatologist and their team.
Don’t Panic, believe in your RA team, yes the drugs can be nasty but I know of no other treatment where you get bloods done so often to catch anything early. So much so that I have missed bloods appointments because I was feeling great and time with work was not on my side.
Unfortunately we’ve been dealt a shit hand but it could be worse, you could be without all of us plonkers to tell you, It’s going to be okay x
I was diagnosed in September - lovely consultant and even better specialist nurse. Have started methotrexate and folic acid apart from some mouth ulcers (fixed by increased folic acid) I have had no side effects. My hands are stiff for a short while in the mornings but after 4 months my bloods are all fine and I am generally pain free - it has been like a wonder drug. Just thought you could have a positive story and I hope it is the same for you.
It is good to hear positive stories.
Don't panic! I've had RA since childhood and coming 55 this year - not dead yet!
hi JAXINE its hard not to look you will never know enough but your body tells the truth I was diagnosed with ra in 2010 my first meds were mtx which gave me terminal lung disease ILD my second sulprasine with steroids gave me an internal bleed my third leflumide gave me severe anorexia 16.9 down to 9 stone then rituximab infusions without mtx which work great for my ra but made my lungs worse I now don take anything other than steroids I have frequent flare ups but still try to keep positive, keep looking and trying to understand what is happening to you but don't despair because most people get relief eventually from meds its trial and error, keep up the fight and good luck to you and all other sufferers,
You have had some time if it. The way you write sounds like your an upbeat person too! I hope you don't have too many flares. X
OMG that's terrible, heard horrible things about methotrexate, you poor thing god this disease is awful
All we can do is trust our doctors and the meds and pray hard.
I’m 66 Jaxine and was diagnosed at 38. I have zero negative R.A. and I’ve had 3 remissions. 2 were triggered by flu in my 40s . It kick started my immune system working normally and my last remission just happened and lasted 13 years. I took no meds when I was in remission. Eat healthily, drink lots of water and try to exercise. Yoga has been great for me. And yes this forum is very supportive . Ann
Fasting improves disease activity in RA patients. I have done intermittent fasting for the last year, and eaten a strict KETO diet and my inflammation markers are barely elevated any more. It does not happen overnight, but fasting can really kick start it. I don't eat for 14 to 16 hours, and when I do eat, I eat only fresh products like meat, fish and vegetables.
All grains and sugars have very bad influence on your body. let them go and you can almost heal yourself... or improve a large number of health issues.
Google "Keto and Rheumatoid Arthritis" There is a ton of articles about it, like these:
Jaxine
Hi, I don't have your problem but do have problems of a different sort. The point I want to make is concerning Google, many of the diagnosis that this site gives out are often of the worst kind of ailment and their comments and treatments often scare you witless. At least the people on this site have either experienced the effects or know better how to tackle them. We do not profess to be medical experts or professionals, we do know what seems best for us as individuals and beats the internet every time. Give it a miss and write a post to this or the BLF direct their nurses will give some sound advice.
IKeith
RA and fibromyalgia...... everywhere hurts
Depression, loneliness and fatigue. 
Sod the flare,I needed cheering up 😊
First timer too
Awaiting bloods , xray results / diagnosis
