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Lack of information & frustration with Rheumatoid Arthritis

It has been 4 months since I was diagnosed with Rheumatoid Arthritis that occurs in my hands, jaws, arms, knees and feet joints. I thought I had all the information I needed from my GP and Rheumatologist. However, every week I am learning new information from various source.

During my own online research I discovered that Rheumatoid Arthritis (RA) is an autoimmune disease. My GP and Rheumatologist failed to mentioned this to me.

For the last 4 months I was under the impression that RA isn't as bad as other symptoms or diseases. That it can be manageable and that people can still live a long fulfilled life. However, now I've been learning that autoimmune disease can lead to other serious complications such as the Lungs, Liver, Heart.

For a person, like myself, who suffers from Health Anxiety, this has utterly depressed me.

I wish the medical team would be more forthright with me. Learning about this on my own was devastating.

After 6 weeks of MTX - it seems my symptoms haven't improved.

I know that there is no cure, and that my life will never be like before. I have been dealt this card and slowly I am trying to accept this - despite being scared of it worsening. RA sucks.

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Hi Sunny down, yep lack of info here too, thank goodness for nras and this site etc. i just got handed bunch of leaflets & patient care plan, waste of trees as i am only one who fills it in l. I ve been dx about 8 months now. I know theyre busy but wld be really good if hospitals did newly diagnosed course explaining honestly disease, drugs blood tests etc, nothing worse than it all being trivialised. i felt totally overwhelmed by disease & lack of info at first so really sympathise. They should ve said to you Mtx can take up to 12 weeks to work; they did give steroid shot to tide over tho'. First 4 mo ths worse for me; does improve or maybe you just get used to it 😄 it does suck!

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I've had the steroid shot, but still feeling the same as before. I do have my next appointment with my Rheumatologist in two weeks time. I will see what they say. The worst part for me is not the pains...its the consequences. Realising my career is over (I am a computer engineer), I won't be able to have a family of my own which has impacted on the relationship with my girlfriend. Been very turbulent. Might even returned to the dangerous dexamethasone - which helped me live normally.

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Hang on a second! Why is your career over? Sure things may be bad right now, but unless you are not explaining the extent of it, there's no reason not to think you won't be able to work again. When I was first diagnosed I couldn't hold so much a teaspoon, but I can do most of what I want now. It may be that you find using your hands for 7+ hours a day is too much, but you should be able to find a way round most problems.

And why can't you have a family of your own? If you look through here you will find many people who are starting families, or have them since diagnosis. Again it will be different from your dream perhaps, but by no means impossible.

This first period is the absolute worst, but for the vast majority of people it does settle, respond to drugs, and you can resume your normal life. Looking on the web just emphasises the negative, and even forums like this make you think the worst. But that's because they are not representative. The big majority of people who are diagnosed have an awful year, perhaps two, and then it's fairly fine. So then they stop using and posting on sites like this because they have no need to!

Yes it's a blow to get the diagnosis, but your life is by no means a disaster now.

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My job (12 hour shifts) was mostly running around various sites whilst carrying, lifting and installing heavy servers and cable connections . With my joint pains I am unable to do this. Even simplest things like belt buckles, shoes laces, opening bottles, writing and typing are problematic for me. Typing is also difficult, but am able to overcome this - due to touchscreen technology.

Starting a family requires lots of activity. If I cannot hold a pen or use a keyboard then how could I hold, care and be responsible for a fragile baby? How can I be active with my children while they are growing up. It is not fair to let my partner/family do this for me.

I also know my body and how it responds to medication. If I've not spotted any improvements over the last 5-6 weeks...I think its unlikely to improve further on. My fortnight blood test also shows my RA levels raising bit by bit.

I don't know at this stage. I can't see the light.

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Well there is light.... I couldn't do any of those sorts of things on diagnosis, and it took months on the drugs before things slowly started to resolve. Like you I couldn't see how I could possibly come back from that position as my joints were so swollen, painful and tender. But I was amazed that it did. It was slow. For me it took a year to find the right mix of drugs to calm the disease. Focus on finding the right drug mix, helping your body along the way with good diet, sleep and gentle exercise, and try not to let the gloom take over.

I now have an active life, and do lots of physical things certainly to a normal level for my age.

5 or 6 weeks is nothing in RA world, sorry. You have to be more patient.

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Hi sunnydown. I was 36 when diagnosed 30 years ago. Get that? 30 years! The drugs available then weren't a patch on the ones now. I couldn't get up or downstairs. I couldn't feed myself. I had 5 children aged 3-11 years old. But perseverance, and a good rheumy who prescribed better drugs as they became available. I worked in a special school with disabled children, and got there by bicycle. There is light, lots of it. As for children, it is inadvisable while on MTX to have them , but a change of drugs would make it possible. Maybe you should discuss this with both your rheumy AND your partner. Surely she should have a say in the decision as to whether you have children or not?

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Your life has given me some encouragement and light. Bless you for doing so well. Keep it up! I hope some of that rubs onto my life too :)

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Hello sunnydown, I have had RA (now referred to as RD) for 54 yrs., had two children, a working career for 40 yrs. and now still functioning. I have taken advantage of all and most types of meds. and treatments (as well as nutritional medicine and complimentary medicine as well). it sounds like you may have an anxiety disorder, pre-existing your diagnosis, which making dealing with entire situation very difficult for you, Also, you have to get your pain under control as this will continue to lead to depression. You can take control of your health if you go step by step. Consider medication for your anxiety/depression since you have to feel more positive in general. Perhaps, go to a private rheumatologist if you can afford this and search around for a top facility. Best of luck to you on your journey.

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Why is your career over? When I was diagnosed in 2004 I couldn’t hold a pen, turn the ignition key on my car or sit on the floor. These were all necessary parts of my job as an infant teacher! I also ran three times a week. After trying various meds I am now on mtx, Enbrel and 7.5 mg oral steroids. After a short period off work I went back and continued to work until I was 59. I returned then because things had got harder, mainly because of the stress caused by ofsted, and after a particularly bad infection I decided there was more to life than work. I made adaptations like buying an electric can opener, buying blouses that go over my head without opening buttons, and making sure hotel rooms have showers rather than a shower over the bath. The only thing I couldn’t get back to was running, but I do take my dogs for three walks a day.

In my experience RA isn’t always the end of life as you know it.

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What ?? RA is not going to kill you, you do need to take medications but for the vast majority of people they work well If I was not taking medication I would not know I have it And if you take the medication the the risk of RA related conditions does reduce. Its a sad fact of life that we get ill but in my view I think I'm lucky to have RA with good meds and not Cancer or Oestoporosis or Lupus etc etc. Yes I also have a couple of other auto immune conditions but I may have got them anyway with or without the RA rearing its head. I have not losty any quality of life am active and mostly very healthy. So I don't suffer with RA I simply live with it. So I'm sorry you feel such angst but do not think your going to get any or all of the other conditions as you simplymight not and if you do then again they can be controlled or treated.

AS for it ending your meaningful life it will if you let it but 6 weeks is not enough time for the MTX to work and its very early days. Try not to Dr Google and just don't buy the coffin or wheelchair yet as it'd be a waste of money.

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A planter ?? and wheelies ??? oh yes; my son used to beg his nan for a go on the racing granny scooter.

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Also, remember that the majority of people using this site are doing so probably because they have current difficulties.... the ones who are really well are busy elsewhere! My own experience was diagnosis over 13 years ago, then a virtual remission (apart from fatigue issues) for the next 12 years before developing more problems recently. I work a very hectic and physical job teaching 4 year olds, and I have only just this year decided to reduce my hours because of fatigue. Good luck, try and keep positive, and focus on what you can do to support and help your body, rather on what you may or may not be able to do in the future. Good luck

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Thanks for the advice. Glad for the positive feedback.

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You’re welcome. It will take you some time to get used to the diagnosis, and to find treatment that works for you. It’s really isn’t fair to have RA, but it is what it is........ you will feel angry, but don’t allow yourself to be defined by this condition. I’ve had tough times and scares with other illness in the last 3 years and it really has given me perspective on this. Doesn’t mean I’m not angry and exhausted (quite often!) but life goes on, it just gets adapted a bit! Best wishes.

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Being diagnosed with RA can be a huge shock and very difficult to take on board and accept. In the beginning I imagine that most people feel like you - I sometimes do still feel like that as it's been a roller coaster 2 years since I was diagnosed. Mtx is the gold standard DMARD for RA, and usually has very good results. It can however take up to 12 - 16 weeks to take real effect. I was on it for about 9 months before my rheumy added in another DMARD and a course of steroids. At the end of the steroids I expected to revert to pain and stiffness, etc. But no, the two meds together made me normal again and apart from mtx side effects I went on like that for another few months. This is where the roller coaster bit comes in - I couldn't tolerate the side effects of both those drugs, even though they worked, so changed to a new one. And it didn't work, and didn't agree with me either, so here I am back to all the horrible RA symptoms again and awaiting starting on a new drug. What I'm trying to say is, initially you have to be patient until the right meds or combination of meds can be found. Once your RA is under control you will most likely be able to live a reasonably good life. It may mean you have to pace yourself a bit, cut back on hours, even change jobs, but no reason why you can't still work. Also as far as being a daddy is concerned, yes, that can happen too - I belong to a Facebook group for RA sufferers and many are young mums and dads. You will be able to handle and cuddle a baby. Please don't write off your life. You can get help with coming to terms with your disease, and your GP can prescribe something if you are feeling really down/can't sleep or whatever. You just have to accept that help! There is so much good and reliable advice on the NRAS website - please don't consult Dr Google! Also, if the steroid injection did not work then ask your rheumy for a course of tablets as they are usually much more successful. I started a course two weeks ago, and the day after starting I was living life normally again. (Unfortunately they are not a long term fix - I wish they were!) I very much understand your health anxiety - having RA and a couple of other conditions I am always fearing the worst and over-thinking things - however, the rheumatologists keep a very close on eye on your health but it is down to you to alert them if you think anything may be amiss of course. Be kind to yourself and remember that to accept your new life with RA you have to allow yourself time to grieve for your old life (just as with any other loss) - and then hopefully, eventually, you can move forward again. Sorry for the long post - it wasn't meant to be a lecture! :)

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That was a wonderful read. I wish I can find myself to be as positive at some point in the future. Thank you for that :)

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I think it is pretty devastating when you re first diagnosed and it's not helped by lack of info about the disease from those charged with your care. I didn't feel in control at all. I m 8 months in and reading posts on here it's all a bit of a marathon not instant fix sadly but does improve with time; nras does really good leaflets/website on disease and drugs and has helpline too. I'm still learning. Hope things improve for you soon.

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There are some very positive reply’s I too find the lack of information a frustration my condition is life changing as it is not controlled after 5years of different drugs etc I have chronic deformed hands and feet now but staying as positive as I can it affects people different

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As Helix said at the beginning of this thread and others after, this doesn't have to be the devastating blow you think it is.

The fact you have come here ( fantastic forum, fair, informative and non judgmental) is a step in the right direction.

Try not to focus on posts that tell of horror deformities because caught early enough and an adherence to your given drug protocol combined with general good health principles will have you living a relatively normal existence. It might be a new normal but you will have a life and a good one.

My advice for the newly diagnosed and the dark period that usually comes with it is to become informed and work with every health professional. Attend all appointments and get blood tests regularly obtaining copies at all times so you can track your progress.

My GP for example has patient access online and I can graph all my Inflammatory markers and my drug sensitive liver for example and visibly see in a pictoral sense my road to remission. Its not quick as all the others tell you but in my case after sudden explosive onset in multiple joints I have gone from not being able to wash my own hair or make a bed, put a shoe on, brush my teeth, to being back in very physical and arduous shift work with no time off sick in 18 months ( touch wood) after having to take 11months off to get the drugs right and rehabilitate.

You don't say whether you are sero positive or sero negative, how is your CRP?

Are you working with your GP in conjunction with your Rheumatologist?

Are you taking the right pain meds?

You mention your girlfriend, how is the support from loved ones and family?

Finally and sorry for the long post, may I say well done for opening up on here. Not easy at all but you have come to a really good place for encouragement and helpful advice.

Good luck on your journey, its tough but you are stronger than you think!

Mx

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You don't say whether you are sero positive or sero negative, how is your CRP?

- I don't know. My doctor didn't tell me anything about that :(

Are you working with your GP in conjunction with your Rheumatologist?

- Just my Rheumatologist. My GP seems to be abandon me to them.

Are you taking the right pain meds?

- On Naprxen. But I don't know if taking these long term will do damage. GP wasn't clear on this.

You mention your girlfriend, how is the support from loved ones and family?

- Broke up with my GF last night. My family know I have this, but don't realise its full impact.

Finally and sorry for the long post, may I say well done for opening up on here. Not easy at all but you have come to a really good place for encouragement and helpful advice.

Good luck on your journey, its tough but you are stronger than you think!

- Thank you for the kind words and advice. Hope it does work out.

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That's sad news about your relationship ending. Was the fact you are going through health difficulties the over riding factor?

IMHO sunnydown you need to speak to someone at NRAS, you need to get some family/friend support and start to get clued up.

This is not going away, whether your diagnosis changes over time thats another story altogether.

Are there other GP's at your surgery? Trying a different doctor can sometimes really help. You need to get some control back even asking your doctor if they can maybe even refer you for some CBT ( cognitive behavioural therapy) which would help you see light at the end of the tunnel and help you focus on getting through this stage after diagnosis. This is especially important if you have health anxiety as you explain in your opening post.

You will be needing regular blood tests and you need these explained to you.

If you are on Naproxen you should be taking a stomach protector like Omaprezole and are you taking your folic acid in conjunction with your methotrexate?

It really is step by step and I think everyone on here will tell you it can be a roller coaster journey. Easier said than done to say everything will be ok but I promise you it will get better.

Mx

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Hello I was first diagnosed with RA in 1980 whilst serving with the RAF. I think I must have tried most of the medications over the years.Finally retired from the service in 1994.Condition has been managed for a number of years and stable. Be positive😀

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Woooa aaarggh! There.... Just a second. It's a horrible diagnosis, and often doctors don't tell you everything because basically some of what you have read might not happen. Everyone is different and have different symptoms of varying degrees. Also reading forums can be daunting because more often than not people come onto forums with their problems (including me of course) so you read the worst things.

It doesn't have to be so depressing and bad. Also stress and anxiety can lead to more damage to your body than rheumatoid disease or an auto immune disease. Try and relax and concentrate on your own experience of the disease rather than worry about what's happening to others.

I was diagnosed with cancer and rheumatoid arthritis in 2006 when my son turned just four. He's now fifteen years old and I've had a major part in his upbringing, including long periods as a house husband etc. And since stopping work in 2012, I've been a full time Dad.

As far as having a career is concerned, I'm not going to sugar coat it, the disease can affect your job, some people it doesn't affect their jobs at all. I myself had several ongoing illnesses that prevented me from working but with the right combination of medicines and small changes there's no reason at all you cannot continue being a software engineer and eventually a parent.

Take it day by day, your symptoms will vary day by day, learn your body and what triggers the disease. Take plenty of rest, and eat well. There are some supplements that you can take as well.

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Thanks for the strong words. Let's hope for our best :)

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Agree with all replies. When you're first diagnosed it's like the world has caved in on you...nothing like pain to really muck with your head! Drugs wise,I'm the same as you and not tolerant of a lot of drugs. Have been through about six and mixtures of. This is my third year now and although a couple of weeks ago thought I would have to change again,looks like things are on the up. I'm an artist and hands also pretty important! Have been slowly back to my studio and the last couple of weeks full time. MOST important advise is to find a rheumatologist that you have faith in...it is he or she that will get you through this...and you will,so don't give up and have patience🌅

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Hi sunnydown I can only add to all other replies. No it is not the end of the world. I've had RA for 23yrs.yes the beginning is hard and devastating.getting the right treatment is important and that will take time.I am still trying new drugs. And what works for me won't be right for you.

Also lifestyle changes is very important. Healthy diet lots of exercise and no stress. I also had to change jobs. You will get there. Be hopeful....

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Look, leave no stone unturned! And yes RA can be cured. I removed a botched job of an infected root canal and got better I've met others too like me that have found the focal point of infection that triggers the autoimmune disease and got better.

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Really ? if the NHS took our root canals out we'd all be cured ??? suprise, suprise dentures do not appeal to me and I had RA long befre the root canals !!!!

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Ps ive no dentures, I love the gap!

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Your welcome to the gap I love my full set of white teeth ! x

I simply object to the idea that raises some people hopes that RA is'curable' by something so bizzare, and if was the case surely antibotics would be needed to treat the infection and are'nt they bad as well. As you say, you did not have RA anyway but reactive A isn't that making your claim factually inaccurate as you 'cured ' the reactive trigger.

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Thanks for your reply. My story is worth telling as I was initially diagnosed with rheumatoid arthritis which lead to life-threatening bleed from methotrexate. If I had continued the rheumatology path I would have then been on a roactemra, a biologic drug. My story is worth telling in case other people on here, similarly have an infected root canal with a file left behind in it, an infection in the root and Bone. I am glad if my story is of help to anyone.

Research the Roadback foundation and the work of Weston a price.

I am happy you are doing well best wishes.

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Yes, if you have misdiagnosed reactive arthritis. To me it seems that there are probably more distinct groups of inflammatory arthritis than we recognise now. Eventually we will know more and be able to pinpoint people who will find that lifestyle changes make a big differences, people where antibiotic treatmemt works and so on.

Until then it's trial and error, and we need to accept that what works for one person will not work for another.

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You you are absolutely correct, I was misdiagnosed . I thought my story was was worth telling incase it's of help to others. Best wishes

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I had my one and only root canal removed hoping it would make a difference also had my NHS amalgam fillings replaced with ones that don't contain any metal. Spent a fortune on dental work and unfortunately it made no difference.

I don't think the dentist left a file in my gum though as in your description. The dentist that did that needs to be struck off.

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I still have a mouth full of amalgams. You are correct re dentist. As the file broke off the upper third of the root was not canaled and I was never told.

I'm so sorry I didn't help you.

You are a warrior and a researcher and hopefully someday you will stumble on something that helps you as well as the mainstream meds.

How are you now?

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Research the work of dentists Weston a price. After my tooth was extracted the rheumatology department changed my diagnosis from rheumatoid arthritis to reactive arthritis. A Croatian rheumatologist told me in Croatia they x-ray people's teeth when they present with rheumatoid arthritis. Best wishes

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Lookup the roadback foundation

And thework of weston a price

I cured my ra by finding the focal point of infection that triggered the autoimmune reaction

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I'm 40 years old and have had RA for 34 years already... So, basically I've had it nearly all my life. But I haven't let it stop me doing stuff. I don't have any kids, but that's not due to RA. It's just a personal choise. Also I have two university degrees and a good career. So, RA isn't the end of the world really. I guess it is a shock when you get diagnosed and everything is new to you. Personally I don't remember being told I have it since I was a child still.

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Glad RA hasn't beaten you. I guess everyone is different. My frame of mind is that I've learnt to accept this day by day.

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