New to RA
I was just diagnosed and yes I'm scored. Please someone give me some positive because I'm scared.
Everything sounds so dismal. No, it's not cancer but people even family are like "oh you have arthritis we all get that". I can't even talk to them..
Hi Tintoy, I was diagnosed back in March and responded really well to Methotrexate but it has not been straightforward getting the dose right. I trust my Rheumatology department though and I've found that working together with them and providing them with as much information as possible really helps move things along. I've also attended my first NRAS meeting which was so enjoyable and I instantly felt I was amongst friends there. RA has brought challenges and I'm listening to my needs better now and not trying to be exactly as I was pre diagnosis. Lots of coffee breaks in cafes now when I'm out shopping and different exercises at the gym. Small examples but so important.
Thank you for responding. I have started the methotrexate and meloxicam It's been 3 weeks now. I don't know what to expect. I have started getting sores in my mouth. I have been queasy and tired a couple of days after the shot. Sometimes I feel like I'm having flare ups in my hands but I don't feel the intense pain. Is that what's happening?? Do you think the flare ups are still happening?? I Don't see the doctor for another 2 weeks. I didn't ask the right questions. I was so shocked I had it I didn't know what to ask. All this reading I've done about this disease has taken my breath away.
Tintoy, do you have a telephone number for the Rheumatology Nurse at your Rheumy clinic ? I frequently use that service with various questions and concerns, and a Nurse gets back within 24 hours during the week. I've also had to contact Out of hours GP, and go to A and E recently when I got some infections as my Methotrexate dose went up. I'm not one for sitting on symptoms and waiting. I always get medical advice. Best be over cautious than under cautious is my golden rule. Hope that helps.
Ok I will probably call too much but I'm lost right now and just communicating w someone who knows what I'm facing is comforting. Thank you
Hi,Have you been prescribed folic acid for your mouth ulcers as they do help
Talk everything through with you rheumy nurse....she has heard it all before &'she will be able to guide you through.
Stop reading about the horrors that abound on Dr Google.Once you have got your head around being diagnosed, you will realise the vast majority of us eventually get settled on a regime that suits us & we lead an almost normal life. I was diagnosed in 1999, & I still have a good quality of life.
I don't mean to sound harsh..but upsetting yourself with reading about symptoms you probably won't get makes no sense....it just makes you feel worse!
Thank you so much your words ring true!!
Hi , the mtx can take up to 12 weeks to start working properly. It can be longer if they need to change your dose but once you are on the right dose and settled it should help and even stop your pain .everyone is different each person responds different to different drug. I trust my rhumy and they are very helpful. They writing down questions you have for your next appointment that's what I do.good look
Thank you so much I appreciate you.
I find sucking fresh pineapple helps with the sores
Yes it does!!!
I'm afraid it is often only your fellow suffers (or sometimes their partners) that can understand how you feel as nobody can understand how your whole body is affected. Any RD drug can take up to 12 weeks to become effective and it can be trial and error to find the one that suits you. There is information on drugs and the disease on NRAS website or the arthritis research site. You should find a number for the rheumy nurse on your consultant appointment outcome letter or hospital website - they are usually more understanding of day to day issues and your fears than the consultant. Many people will come up with their own 'cure' and 'my granny had a bit of that in her finger' which is also very frustrating. Farm
Yes I will follow your advice and believe me I've read so much online I'm overwhelmed. I appreciate your reply so quickly. So I'm 3 weeks into it and really don't know what to expect but I appreciate your insight. Any advice helps now.
Are you in the US? I was wondering because you refer to Meloxicam. But, nonetheless, I'd hope that someone here would be able to answer any questions that you have or signpost you to helpful information. Are you taking folic acid alongside the methotrexate injections as many people find that helps with the nausea but it can take a while to adapt to this?
Inflammatory arthritis is overwhelming when it happens. It's not something that is readily understood by other people so it's unlikely that you can obtain useful support from family and friends who aren't familiar with it.
However, a lot of information out there highlights the aspects of these systemic illnesses that are intimidating and make us alarmed for the future. Many people discover that modern pharmaceutical interventions work work for them and halt or slow the progression of the disease so that the quality of life for people with RA etc. is so much better than it has been up until quite recently. I'd hope that you will be one of those for whom treatment brings your disease under control as soon as practical.
Thank you for responding. I am in Texas. I am on meloxicam. Is it not used much here??
I am on folic acid.
You are right I have no support system. I can't really blame people because I did not realize what this disease entailed until I was diagnosed with it. The name is very misleading to the general public.
Thank you for your good wishes.
It's less commonly used in the UK unless (like Matilda_1922) you have a known contraindication with the NSAIDs we tend to use here. I'm more accustomed to it being used in the US.
You're taking the folic acid x1 a week or on every day except MTX day? It might be something to which you adjust and I hope for this for you as the disease is life-sapping enough at the outset without the settling-in effects of the necessary medications.
I take folic acid 2x a day
Hi I take meloxicam and I live in the UK. I have asthma and can't have any other nsaid.
Methrotrexate can cause mouth ulcers as well as nausea. Usually you are given Folic acid as this helps to reduce side effects of methotrexate.
I wish you all the best it's very annoying when non RA sufferers don't understand how you feel.
Yes it's irritating but honestly until I got it I was one of them. I am ashamed.
I should have known the difference between the two so I should ashamed!
Hello Matilda. My daughter took RA at 18. I took it ten years later at 54. My grand-daughter took it at 12. Devastated or what? I thought I was in hell I felt so bad. The two younger ones tolerate mtx. but I lost a day of sleep/sickness on it which then went up to two days. I was taken off that and had to wait a year For Tocilizumab, self injection, which worked fine for my joints but too many complications and eventual pain. I was taken off it eight weeks ago and it takes 3 months to get out of your system. RA is trial and error with each individual patient. Grand -daughter is on pen injection for Enbrel plus her Mtx. She has had glandular fever. Tonsils out. Really hard time this past eight months. . Having to repeat 3rd year at Uni because of it. She seems to be more settled. I hope you get on some drug that helps you. If it does not feel right. Say so. There are plenty of drugs out there for RA I was told. I need to wait a while to get on to another, I’ve been on a few and my body does not seem to tolerate most of them. Codeine/paracetamol is good. I am 74 now and feeling ok this year with the good weather. I always feel so bad when a younger person takes it as they have a life ahead. Going on holiday I have to take a case of stuff, just in case something happens. I’ve had a few bad winters even with the injection. Tell your specialist if you do not feel great because they all think we are happy when you don’t tell them. One old doc asked me how I was one time almost 20 years ago. I said my hands are really sore. He said, well you have RA, what do you expect. It’s all changed now thankfully and most of the specialists and nurses understand more. Good luck to you and everyone else with RA.
Sometimes I say I have an "auto-immune disease" because I swear if I hear "oh, yeah, I have arthritis too" I may scream. I know its petty but it's hard when you are so sick and to have to explain it over and over. If I do say I have RA and they say "me too", I say RA is my body attacking itself from the inside, not wear and tear. They usually still look at me funny though, not understanding.
Hang in there and most important is to educate your supporting people, ignore the rest.
You are so spot on right and I'm going to use your auto immune disease answer. It is not petty and it's pain!!!!!
Do!!! I wish they wouldn’t have called it “arthritis” because it’s not. Not really. I hope they find the right med as soon as possible. I was so excited to finally know what “it” was that I was going through. Then I found out how long it’s going to take for even the right med to work. I hope you have a good support system ❤️
Cheshcat, hahaha... I want to laugh reading through what you wrote here.
When I was so sick, I chose not to tell my mom and my kids, they were far away from me. However, I did tell my friends who were around me. My daughter came back after about a month of my downfall, when I got very much better, we went home to visit my mom, I told her my problem since she could see that I was not as mobile and active then. Same thing she said, I had it too on my shoulders and hands. I had hard time to explain to her the difference, she said no big deal, she had the same.
One day, my mom told my auntie about my problem. The RA attacked was quick and fast on me and I left with only about 38 kg and I could not really walk. Then my auntie said that her daughter had the same at her very early age after delivery but non of us knew about that. My auntie told my mom that she when over to look after her daughter for a long time until she was able to look after herself.
Words from my auntie, my mom's elder sister, my mom believed and trusted her that RA was indeed different. In fact, I gave up to explain and to talk about it as I knew I would not get any support from my mom.
On the other hand, after my daughter came back, I started to break the news to my sons. My eldest son wanted me to show my hands to him while we webcam chat, then he said that I was okay then. I knew, he checked what RA was all about before he chatted with me. He did his research well before hand so I felt so good that my son understood what I was in.
I had the same reaction from my mum too.
Very sad and sickening when our own mothers do not trust listen to us and support us. I have been always alone since I was young, may be my mom was too busy to listen to me. NO WORD....
I'm sorry you didn't feel safe to share <3
It's humbling to admit you are sick. I still have a hard time. Yesterday, I didn't really say anything to anyone and last night I told my husband, its been a really hard day today, I've had a lot of pain. I'm not sure why I didn't say anything earlier. It's a knee jerk reaction for me. I'm sort of a self contained person. Working on that.......
I tried my auto-immune just yesterday, then she asked which and I said rheumatoid (leaving off the arthritis) and she still said "oh yeah, I have that too in my knees). It feels petty but it bugs me.
So thankful for these wonderful boards <3
Yes, in future just leave the arthritis out. Just say rheumatoid or auto-immune, if anyone puzzle, so be it, at least he or she will not say he or she has the same if he or she has not.
I am so sorry to read this story. I have just found this site and joined. I hope you get what makes you feel better. I posted yesterday and today. It’s an unusual disease as it’s trial and error. Hope your mum starts to understand. I am sure it’s difficult when she is far away. When my daughter took it at 18 I was treating her myself as I just thought she had some pain. Not until I went privately I found out the worst. Speak to your specialists. Tell them when you are not right. Read about it for help and support. I do hope you feel better soon
I am perfectly okay now. I am already in remission after a year and a half treatment. The most important thing we need during our suffering is to have someone to listen to us and trust what we say. We do know that they cannot feel how we feel unless they have the same disease, just support us and listen to us will give us the strength to move on.
Yes, it is not a simple disease. The pain really kill us and immobile us.
I well know, Amy-Lee. I’ve had it for 20 years, my daughter 26 years and grand daughter 9 years. Many of the meds I read of here I’ve been on. For some reason my body does not seem to tolerate them. Sulpha..enbrel..Tocilizumab (Self Injection) etc. Getting off Toc. has been a big problem with side effects that will last 3 months. I keep going and hope for the best. Temperature changes do affect me greatly and we can do nothing about the weather. I hope you keep well. As they say. Keep taking the tablets. There is nothing much else we can do. Everyone looks at me now at 74 years old and says, You look so well. It’s great what a bit of makeup can hide 😍
Agree, just do what you feel good about yourself and to live your own life! Sometimes my joints do feel a bit uncomfortable when I am in a air-conditioner room. I am lucky that the weather here is always hot hence not much a problem for me.
I hope you can find a medicine that suit you and help you. I did have a lot of side effects too when I took methotrexate earlier. Now as I only take 3 tablets a week, I am lucky that I already feel normal.
I often say rheumatoid disease but people still look puzzled.
Yes! I like rheumatoid disease though, I may try that one next
Well I'm 7 years post-diagnosis and I'm fine! Took a while to find the right treatment and dose levels but I got there in the end.
If you are getting mouth ulcers then I hope you've told the rheumy nurse? And discussed how much folic acid you take each week as sometimes increasing it can sort the mouth sores. I started getting them after 2 years on Methotrexate and was swapped on to methotrexate injections which sorted the problem and they've never come back (fingers crossed).
Thanks double helix
Your helix helix was my first smile today. Kind of appropriate since this could be genetic. They did tell me I may get them and that hair may fall out as well. I just excepted it because I was told it may happen. They did double the folic this week but the sores started before that.
Helix Helix is also the Latin name for a snail, so equally appropriate I felt.
My hair also thinned for the first few months, but then settled down and is ok again.
Thank you I did not know about the snail.
The Dr mentioned the hair so I will just accept the good possibility of it.
I was shocked when I was told I had RA. I did not know what RA was all about. I did my research online and found a lot of people pushing their own products and own program. It told me a long time to finally get some good information that I shared here.
All of us will have different recovery processes, but the key is to work closely to your rheumy and to exercise daily. Whatever supplement that you intend to take, check with your rheumy first. Be very honest and frank to your rheumy then he or she can control your disease better.
For positive improvement, go to the links below to see my progress: -
As I said, I have some very good and reliable videos that I posted earlier. I got most of my answers from the videos: -
I am always into what is the latest update, here are the very good and simplified videos to know: -
To ensure our joints are flexible, we need to have daily exercises. However, at the early stage, I could hardly do any but I did what I could and I always tested for extra. I am back to normal after many months of painful exercises and it was indeed a very hard work for me, the RA patient. Below were the kind of exercises that I started with for your reference, I believe that will give you an idea on what exercises you can get on with at this very early stage: -
I hope above links help you to feel and know better. At least after going through the videos on what RA is all about and what do expect and the update, I know what I am in and I know what I have to do. Take good care and be patient, you will soon find the correct medication for you.
Thank you Amy!!! I am going to start hitting all the links you sent. I have been doing research too and many times I start reading good info then it becomes a sales ad. I am only beginning and you have sent me vital info that I need.
Yes, I experienced that too. A lot of the links are just sales ad. What I uploaded here only links that I find very useful too all, especially I learned a lot from them all.
Watching videos now
Im two years post diagnoses, im not yet on the right meds but i have now accepted the ra and it already actually feels so much better just with pain killers and steriods.
I try not to talk too much about my ra because no one but my husband and mum gives me much support, if I tell anyone I get the usual awwww your young to have arthritis and it really annoys me. Anyway! You will get there ❤️
Yeah I told a friend I had ra and it was painful and she said "yeah I was playing golf and had to take an ibuprofen" she got an education on RA real quick.
I realize people don't understand it because I didn't til I got it!!! I am getting an education I never expected. People have noooooo idea. Some one told me to tell people you have an auto immune disease, so I am!
Yeah I say I have an autoimmune disease and always say ra rather than the full name, but that's only if anyone asks if I'm limping. Even my dad shows me no empathy, or even worse it's when people force the empathy and actually don't mean it. I just avoid the convo now. Hope you are ok, I only joined this forum last week and everyone is amazing on here
Hey I was diagnosed in April & still feel like my life is in a whirlwind. I was put on methotrexate, prednisone & folic acid to begin with. I had bad side effects in August was taken off the methotrexate & switched to Leflunomide in October. I feel like I’m a pest to my doctor I text & email her with questions often. When I go see her I write down all my questions & go through one by one.
I’m still scared don’t know when & if that feeling will go away.
I am just starting and I'm shocked and scared and overwhelmed and have no idea what to expect. Definitely going to write down lots of those. I was so unprepared. In the beginning they said I had an infection. NOT it was RA!!!
Every case is different but in the 2 years since I was diagnosed and got treatment it honestly hasn't been that bad. Before my diagnosis there were days I could barely walk and I was terrified about what the future held, but now I pretty much lead a normal life apart from some occasional minor aches and pains. I realize my situation could change and not everyone is as fortunate, but we're lucky to be grappling with a disease with lots of treatment options that give you a very good chance to maintain a normal lifestyle.
What treatment are you on?
Humira, sulfasalizine and hydroxicloroquine. (Sp??)
I am sorry you have had to join us,but you have found a great site as you can see by all the replies. You will get back to some normal,but not like before. As to your family get some info from the hospital and hand it to them. xxxxx
Hi and welcome, but sorry you need to join us!
I am four years post diagnosis, and feeling really very good. I had about 2 years that we’re really hard and painful and I felt I would never be normal again.
But, I put my trust in my Rheumy team and have done everything they have told me. Here I am in a good place again - better in some ways as I don’t take anything for granted and really appreciate and am thankful for how I am now.
I feel my life is really good - yes, I have RA but it is under control.
I’m on a high dose of MXT, hydroxychloroquine and folic acid plus pain relief and anti inflammatories as required. My liver suffers because of the MXT etc.
I live on my own, many of my friends don’t understand RA, so I expect nothing from anyone - if they don’t understand it really doesn’t matter.
I have a few who do, so I am lucky.
I am in such a different place to where I was four years ago, I couldn’t imagine being almost normal again but you will get there too. It won’t happen overnight and it’s a tough old journey but hang on in there, it will happen 😀xx
Of course you're scared and feeling overwhelmed. Sounds pretty normal to me. It the first anniversary of my diagnosis tomorrow and, believe me, you could not be more scared than I was. A year on and, touch wood, life is so much better. My hands work and I rarely need painkillers for them. It will take time to get your meds tailored to suit you but you are on the right path.
As for others, I don't bother explaining usually. Most don't get it and, I swear if one more person says "oh yes. My granny had that in her knees" I'm going to use the saintly smile I've been practicing and swear later. Explaining takes more time and energy than I want to spare. Welcome to the forum. I look forward to hearing more from you.
Thank you for your wisdom and words. Although I'm alone here basically, I have you guys to vent to. I'm accepting what I have but I do wonder how it will go since treatment is just beginning. Oh I feel short of breath this am. Is that normal???? I'm never short of breath???
Try not to panic. Being worried or anxious could make you feel breathless and maybe even dizzy. That is a normal reaction to a high stress situation. Do you have a health helpline you could ring or even visit the ER? If you can, check out 'mindfulness'. It helps teach us to appreciate the good things in our lives. Wishing you better
Hello Tinto, by now you've realised what an excellent forum this is. You'll always find some sympathetic and helpful people on here. I was diagnosed in 2009 and since 2013, I am in remission and lead an active life. As this is all so new and can be overwhelming, i'd recommend you have a look at the NRAS website. They have a lot of very useful information to read or download, so you don't rely on Dr, Google (very dangerous). They also have a helpdesk with wonderful people at the other end of the phone. All the very best and keep in touch.
Thank you for your support. It's nice to know we have a connection online to reach out to.
I wonder how people dealt with this alone w no resources like we have. I was a young teen the last time I saw my grandma and her hands and feet were severely disfigured. I'm sure it was RD. My heart hurts for how she must have suffered back in the 60s.
You need to Ask your Rheumatology department for a prescription for folic acid. If you're already taking folic acid then you need to up your dosage. This will help with the mouth sores. When I got on it I got horrible sores on my tongue and with an increase in folic acid that helped.
They did increase dosage so we will see. Thanks
I was only diagnosed 3/4 months ago and yes, it is scary! I knew nothing about it before until I started Googling symptoms and praying it wasn't RA. It is so frustrating that there's so little awareness and I got so angry with people comparing it to (osteo-) arthritis as it's not and has no medical connection! But then I thought how much do I really know about people's experiences of other awful diseases.
Anyway the upshot is I say I have Rheumatoid Disease now (after RA Warrior's USA book) or tell people I have an auto-immune disease: so much better than the 'arthritis' word! I have found this site invaluable as no-one understands like other people with it and you can come on and have a little whine and a moan, seek others advice and experiences instead of boring our family and friends with it (mine are lovely and supportive, bless ' em but sometimes I feel like it's all I talk and think about). All the best.
I hear you and I feel you. My family tries but they don't understand but we have this site with each other and I thank God for that everyday.
I’m a 32yr veteran of RHeumatoid Arthritis and the best way to deal with fear and RA is a day at a time do what you can in your daily life and what you can’t leave for another day , take your tablets regularly with something to eat as some can upset the tummy talk to your DR or Nurse and they might be able to put you in touch with some organisations if you want other wise we’re always here to chat , but stay positive don’t make RA an enemy it’s now a part of your life so make it the best you can ,
There are exercises for your hands ,all parts of the body really swimming is good too , try not to push your friends and family away because of the pain but remember you will always be the same person you were before your Doctors diagnosis
I hope this helps and doesn’t scare you 💕Dawn
Thank you for your support, your words, and compassion. You are right!! Accepting this has been hard. I'm still struggling with it but it's been a month and I'm getting better. I have been on the internet researching to the point it's scares me so I've stopped for awhile.
Anyway have a good Thanksgiving!!! 🦃
Thankyou sweetheart but don’t read to much sometimes it’s just better to get on with your life ,just make the most that you can and enjoy what you’ve accomplished take care my love and happy Thanksgiving to you and your family 🌺🌺
I am just coming on my two year anniversary of diagnosis. I went from barely being able to walk stairs, turn door handles, sitting, walking, unforgiving daily pain and relentless fatigue to a career change, a healthier lifestyle and a sense of getting my life back. Don’t be too scared about the diagnosis as there is great medicines out there that will help, you just have to find what works for you. Working with your Rheumatologist is key as well as learning to understand your own body. For example I don’t exercise in the early am or evening as that is not my best time but just getting that workout in is important. Be forgiving of yourself and understanding your limitations is key. Push when you can and relax when you can’t. Best of luck
Thanks so much for your support. I will follow your advice as best I can. Take care and have a great holiday!!!!
Hi tintoy, sorry to hear about your arthritis. But don't worry there is plenty of help out there. It will be a matter of trial and error. What works for one does not work for another. I am 68 now and I have had RA for 22yrs. The first 13 years I worked. But never had a day off due to arthritis. Mtx has been the main treatment for me. Sulphasalazine worked for a while but not anymore. I take meloxicam and paracetamol for pain. Exercise is very important. Also try to reduce stress as much as you can. You will discover what triggers you have. White wine and shampagne makes my fingers swell and ache but I can tolerate red wine. It's not bad after all there are so many worse diseases..... Hope you settle down to a treatment regime soon and live a pain free life..
Thank you I am exercising. I'm afraid I can't lose the stress cause my family is totally dysfunctional and they stress me. Sometimes I think I should move far far away which would break moms heart because I'm her only "sober" support. She has A bad heart.
So sorry to hear that tintoy stress definitely is a huge arthritis trigger I can actually go back to when my arthritis started it is a long story when I was totally stressed for three days. I really hope you can sort something out, bless you.
Trying so hard Thank you
Hey! I'm Kimberly and was diagnosed 14 mths ago. My RA values were literally off the charts. I knew something was wrong when he called me at 7:00pm on a Friday night. The news hit me like a mac truck! I had just been released from my orthopedic surgeon asoer four foot surgeries during the past two years. My bones had refused to fuse back together. My hardware broke once. My last surgery was because I woke up one morning and my foot didn't work. That scared the hell out of me! I immediately had a MRI. My doctor called me himself that night to tell me that it was "drop foot". I needed surgery once again to see what was causing it. It ended up being from my hardware impingeing a nerve.
Anyway, you can imagine my state of mind getting that phone call. I had just spent the previous 2 years in a cast or boot, unable to drive and now I had an autoimmune disease! I worked in healthcare so I was somewhat familiar with it. I was stricken with the ole osteoarthritis years before. But RA was a disease!
Since then, I have been on different meds. After being on Methotrexate (referred as MTX for short) for 6-8 months I had adverse effects from it.
And let me tell you now that you may have the most weird effects come out of nowhere. I initially was told that you never know whats gonna act up from one day to the next. You later adjust to it though. that some are just weird. Some will last only a day. Once, I was drinking my coffee and I realized I really couldn't feel cup on my lips. It became completely numb. Gradually my nose did the same thing! Tingling but numb, no biggie I thought. It wasn't causing anything else. Well, within ap. 6 hrs later every single orifice was numb. Think about it, every opening you have was numb and tingly! The next morning everything was normal.
Okay, I will quit telling you about myself and address you. I only want you to know that it will be okay. First off immerse yourself with learning all you can about RA. You MUST be your own advocate. Learn about the drugs that are absorbing in your body right now. This can be frightening as hell because these drugs can be wicked. The one I'm on right now stays in your system for 2 years after you quit taking it.
You need to know your lab results and what they may indicate. Don't rely on your doctor telling you that everything is normal. They're extremely busy with many patients just like us. And as with other stuff in life that completely stops you in your steps, you can and will accept it. We don't have something such as pneumonia that will run its course and leave your body. No, we have a autoimmune disease that can attack anywhere in our bodies. Don't forget that because you need to be aware of other stuff like your heart and lungs especially. Watch for any increases in blood pressure, its pretty common among side effects.
Because I am only a year old with RA there's so much I don't know.
And I think everyone with RA has the same family and friends. Totally clueless that this is NOT about bones. That we feel questioned if we are too tired to do things we used to do. We look fine on the outside so assumptions about whether or not we are telling the truth. I think that when I told them that just having RA, our lifetime is cut by 10 years. Multiple studies show that. Also the that I shared the fact that my infusion contains chemo and it was charged as "chemo" $350 on my insurance kinda convinced them that maybe something is going on with me.
I found a webpage selling t-shirts with "I may look fine but I have a chronic disease." There were some really good ones. So that is normal I guess.
I know I didn't help much. Oh! And yes, I too have had mouth ulcers. I forgot which med was common to this side effect. I had my Rheumy order Acyclavire (spelling?)
My Vector is the exact same number as it was when I was first diagnosed, August 2016. I think it's finally sunk in that this is a major life event and I hate it. But my motto that I constantly think of when a sh#t storm hits is "It is What it is" Nothing we can do about it but kick the little bastards ass!
I am a research junkie so if I can help you in any way please let me know.
Research junkie 👩🏫 👩💻 🕵️♀️🔎, KSIXX2/ Kimberly, I've just replied to Tintoy43_ (below) with a link to references that might be useful.
Now, if you're a research junkie who'd like to main line 💉 the mother load of Resources 📝 I'd found invaluable, see Kai-- profile: healthunlocked.com/user/kai...
(Merely click on the blue "Read more" text.)
A list of References will appear. 📝
They were accumulated (over time) like a 'Table of Contents' of a book 📕 & are merely listed for easy skimming. 😌 🙏
You're welcome to leisurely peruse 👓 👀 anything that sparks 💥 your interest.
Or, happily, voraciously devour 🍖 🐕 anything that has you hungrily seeking more. 😁 ☺️
Or, If it's simply 'not your cup of tea' ☕️ , readily by-pass/ ignore. 🙏 😑
Best wishes to you, Kimberly. 🙏 🍀 🌺 🌞
Thank you so much
I am getting quite the education!!!!
Thank you for all of your words. They mean a lot. I appreciate your candor as I like the "bottom line" about things (in laymans terms of course).
I have read so much it scares me. Only we with the disease truly understand. You quoted what I have said these last 4 weeks "it is what it is". Sometimes I'm scared and sometimes I'm pissed but this is now my life.
A question-sometimes I feel a little out of breath when doing absolutely nothing. Is that normal?? I used to run a lot so being out of breath is unusual.
I get breathless too, even when doing nothing and never did b4 RD, in fact this and long lasting flu and fatigue were first symptoms b4 joint swelling, weird eh? I've had x-rays and spirometry: all clear, came off methotrexate once when really bad. I read somewhere RD can inflame tissues too like airways? Obviously i am not dr. and would check with your rheumatologist or GP but am as mystified by it as you are.
Ok so maybe it's normal I don't know. I don't know what to expect and that's the scary part.
Ok what is spirometry??
I don't think it's normal to be breathless all the time, though mine comes and goes; it can also be side effect of some of the drugs so please get it checked. Spirometry is pulmonary or lung function test (you just blow in a tube and they measure it lol) often used for asthma or copd i believe. I never had breathing problems before this and don't smoke, sorry I'm as clueless as you are but it does seem a common problem
I have so much to learn. I don't know what the numbers and all the terminology means. Right now I'm out of breath and I don't know why. Going to research that now!!! Thank you for being there!!
Kindly see Infographic ( bmj.com/content/bmj/suppl/2... ) noting breathing/ lung reactions to Methotrexate (MTX) (as well as other DMARDs) & the need to make rheumatologist/ medics aware of breathing issues, Tintoy43_. 🙏 🍀 🌺 🌞
Thank you for being there!!!!!
Howdy, lone-star state ⭐️ , Tintoy43_! 👋
Abundant positives ➕ ➕ ➕ & hope! 👍
See Doughnut61's (🍩 61 ) post: healthunlocked.com/nras/pos...
Needn't worry about being alone 🕴, you've plenty of loving 💕 support & people 👨👩👧👦👨👩👦👦 (who truly understand) to talk with here. 🙏
Hopefully, you can eventually surround yourself with understanding 😌 , loving support 💞 on the homefront 🏡 too ❣️
Sometimes just having a family member 👨👩👧👦 accompany to your rheumatology appointments helps them gain a better understanding 🤔 of what the (unfortunately named) Autoimmune Disease actually is. 👍👍
Attending a few appts. 📆 gets them 'involved'. 🤔
And, word can eventually 'get round' 🗣 💬 . .🗣 💬 . . that RA's not merely being a wee bit of 'joint ache' 💥💪 . . . 🤚💥 . . . but an overall body system disease. 😳 🙃
Take good care, Tintoy43_. 🙏 🍀 🌺 🌞
Thank you for your encouragement!!!
I hope you have a great Thanksgiving!!!!
Right back at ya, Tintoy43_! 😌 🙏 ☺️
for the 🐱 : giphy.com/gifs/zGospUSpPfPt...
for the 🐶 : giphy.com/gifs/bg2ypb4qLz4f...
for the 🐹 : giphy.com/gifs/3oEduTIk4OBg...
for the 😋 : giphy.com/gifs/irZ58gC4WGaH...
for the 🐥 : giphy.com/gifs/TcA5JLbjPmC4...
for the 👱 : giphy.com/gifs/vmNvy0UQd8e7...
for the 🦃 : giphy.com/gifs/3o8doV0NFZjH...
🙏 🍀 🌺 🌞
Kai how do you handle sick people around you?
It's the holidays! I'm scared and I know my grandson just got diagnosed w strep.
I merely do my best to avoid proximity to anyone with colds/ illness 🤧 😷 🤢 to minimise catching anything, Tintoy43_. [I tend to err on the side of caution. 😳 That's just me. 🙃 ]
I know, I know. . . It's Holiday time 🦃 🎄 🎅 & you want to enjoy time with loved ones 👨👩👧👦👨👩👦👦 . 😌
Since strep is contagious ( mayoclinic.org/diseases-con... , nhs.uk/conditions/Streptoco... ), & I'm assuming you want to avoid catching it, best stay clear of your grandson. 😳
It's a good question to toss out to the group to get a variety of tips/ ideas that other folks may have. Probably lots of good ideas about. 👍👍
Other than playing 'boy in the plastic bubble', I'm not aware of a workaround for safely dealing with an infected loved one. 🤔 [Slathering on Purell seems ineffective/ impractical & hermetically sealing the child in Saran Wrap seems a bit cruel . . . 😯 😬 😂 ]
Kindly don't hesitate posing query ❓ to group as someone may have a creative workaround that we're not commonly aware of. 👍👍
Hoping there's an effective solution, Tintoy43_. 🙏 🍀 🌺 🌞
Hi Tintoy. I don't know much about RA but just wanted to give you a hug and show some support. I hope everything goes well for you. Best wishes x
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