Morning, I just wanted to ask you all when you were in early stages or before diagnosis, did you have the “unwell” feeling a lot as well as the pain? As yous know I’m struggling just now but some days ( usually mornings) I wake up so sore and lethargic and strangely very upset can yous relate to the tears 😭
Tearful: Morning, I just wanted to ask you all when you... - NRAS
Tearful
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Goodwin69
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•
Morning goodwin
Sorry to hear you're unwell.
The malaise or fluey feeling is a classic symptom of inflammatory arthritis as the immune system is all fired up. You can even get a raised temperature. So is morning stiffness and Rheumatologist use it to monitor disease activity.
The early days before diagnosis or treatment commencing are hard. Sometime steroids are needed to dampen down symptoms.
Practical things you can do are:
Rest and sleep when feeling awful but keep gently moving to keep muscles active. Muscles support the joints.
Take regular pain killers.
Use gel ice packs for swollen and hot areas (not heat)
Epsom salts baths or hot shower.
Anti inflammatories with food.
I hope you feel better soon.
Kiki x
Goodwin69• in reply to
Thankyou Kiki, yea if things don’t improve in few days I’ve to get steroid injection ❤️
Good morning...yes, I get that unwell feeling, like I am going to faint, comes all of a sudden, I deal with that by stopping what I am doing and sit or lie down, drink some water and it soon goes away...I know exactly how you fell
Thankyou for replying safado , yea I tend to have to lie down everyday just now , did you feel like in this early days too?
I’ve been diagnosed 4 years now and before diagnosis I often got the flu or virus ( many times in one year ) now know it’s a symptom of RA . Woke up this morning feeling just like I have the flu and my joints are on strike 🥺 a sign my disease is active. When you get repeated episodes I t can drag you down emotionally. This disease is not just about the physical. Hope things pick up for you. Weather plays a part in it. Today is suddenly much colder and very wet . I’m blaming the weather.
Goodwin69• in reply to
Hi thankyou for replying, yea it’s a horrible feeling and very difficult to explain , I’ve been feeling like this since February and haven’t been able to work for 5 weeks, I just hope I see a rheumatologist soon so that I can adjust accordingly ❤️
• in reply toGoodwin69
This Covid situation has left many in limbo .. newly diagnosed and those whose treatments are not working. Everything takes time with RA medication often takes 12 weeks to kick in . Patience is something you learn with this disease and even after years it still takes me by surprise. The main thing is your not on your own we do understand as many who don’t have this disease just don’t get it and I include GPs in this. Learning to live and adapt is the name of the game. I still learning 😁 rest rest and be kind to yourself x
Goodwin69• in reply to
Thankyou ❤️
Definitely a common symptom; my initial "attack" in December '18 felt like post-viral fatigue when I hadn't had a virus - it felt like flu without the respiratory symptoms. The joint problems followed a couple of weeks later. I've always got teary when I feel ill and just having to deal with the diagnosis is emotionally draining. Just try to rest and be kind to yourself - sofa and mag or TV.
Yes, it is totally part of this disease. I am sorry you are feeling like this. I found taking the steroid dose in the middle of the night (midnight now) made all the difference for me personally.
I hope you find the right balance of rest and pain relief for yourself while waiting for treatment to take over. Gentle hugs and be kind to yourself.
Thankyou ❤️
I can completely relate to how you are feeling as many of us can. Lots of great advice given already. Being gentle and kind with yourself is so important. Lots of gentle virtual hugs from me. x
Thankyou ❤️
Yes, me too I often feel generally unwell and fatigued beyond belief. It can be hard to cope with at times.
Hi Goodwin. I started feeling unwell several months before diagnosis. I felt so very tired and achy all the time and kept falling asleep during the afternoon - I really thought I had a virus. It really does drag you down doesn't it?
Hi Springcross, aww it’s terrible when I think about it I’ve probably felt like this for a long time and didn’t think , but since February boom joints in agony 😪
It really is a nasty disease. x
I am newly diagnosed and awaiting starting on methatrexate;I've had a couple of really bad days joint wise and yesterday took myself off away from my children and just cried like a baby!
Sometimes it feels good to get it all out! I feel bad for my husband to listen to me like this, yesterday I was saying "I don't want this" which is quite childish I mean nobody would ask for this would they 😅
I find at the moment I overthink things which just leads to me getting scared and my pain feels even worse! I've got to learn to try and think of something else (I'm watching Mad Men at the moment to take my mind off things) and not let to consume my every thought.
Everything is slow, Drs, hospitals etc which is really frustrating, be prepared, get hot water bottles, ice packs ready to go, pain pills, nice food plus this forum is amazingly awesome.
I think this stage where we aren't on any DMARDS or steroids etc is a really tough crappy stage, things will get better with treatment and give ourselves time to come to terms mentally with what we've got and be kind to ourselves.
Good luck xx liz
Yea your right it’s a lot to get your head round ... thankyou for replying ❤️
The first few months are brutal. The trial and error to see what works and what doesn’t is dreadful. I think I must have spent the best part of a year sitting on the sofa practically staring into space. It really only changed for me when I started biologics. It was like a miracle. Off came the compression gloves, out went the gadgets to help chop food and open things. Flipping heck, I could even get up a step without it taking twenty attempts haha.
The good news is, you will get to that one way or another eventually. It may just take time and patience. Two years now for me that I’ve felt so much better. Not the same as four years ago, but so much different to first diagnosis days. I would call your doc for steroids though. Don’t wait as they could make so much difference whilst you’re waiting for rheumy appointment.
Lots of luck ❤️
Hi cwendyn, thankyou for replying I’m glad your feeling better, yea I’m going for steroid later in week 🤞
I was the same too but thank god for this forum as i got some great support from strangers who i dont know but are there for me and understand. It does get easier but dont let emotions make you feel lonely. We are here for you. Sharing always lightens the load xx
Yes, that's exactly how I feel when this rotten disease flares up. Either tearful, not like 'me' at all, or irritable. You've already been given sensible advice so I'll just wish you the best and wish for an early appointment for you. Hugs
Thankyou❤️
And the lesson I wish I’d learned early is not to beat yourself up over feeling bad/not being able to do things/ cancelling appointments/ etc etc. Right now you need to be kind to yourself. You will get through this, and the real you will reappear.
Hi helixheli, thankyou for replying, yea a lot of cancellations lately ❤️
The body has such a shock with all that is happening early RA and the emotions too. If you’ve been very athletic and mobile and now you’re not, or you’ve had to stop working (all that happened to me and to many of us) then it’s such a huge change. I was told by my rheumy that you grieve for the person you were. You can be very angry too as you can no longer do things, but you think differently and find things you can enjoy. I’d say to you your life could be different but different isn’t all bad. I accept I’m not going to sprint anymore like the athlete I was or go fell walking but instead we’ll drive to the hills and park up and do a small stroll on the flat and take in the air and view. I’ll take my art things with me and draw/paint that wonderful view.
Good news is that even though you feel awful with this general malaise from the RA and how hard it can be to go on meds etc, if you’ve only been used to a Rennie or occasional Panadol, these RA meds will put you back on track and you’ll get very savvy how to do things to suit you and you’ll think differently too! (I completed a degree I had started and went on to do two others so I can’t say RA has stopped me in my tracks that way, but every now and then it pops up to remind you it’s there even when you’re doing very well.) Many people have anaemia and weight loss early RA so struggle to do much until this is under control. That was my case and I had little strength. It all came back good even if took some months. Hydrotherapy was excellent for me as was a brilliant physio, but that’s difficult at the moment to do these things. Good luck and keep us informed of your progress. 💗
Hi , thankyou for sharing your experience, I totally get the grieving reference , I’m really trying to keep positive and deal with my changes x
Yes I was told exactly the same pain was horrendous had to go to hospital straight away they gave me steroid injection I could easy work within 10 minutes hope you get sorted soon I really feel for you but things will get better stay positive x
Hi, thankyou for replying, 🤞I get the injection this week x
Oh yes indeed, so be kind to yourself, listen to your body and don't push it.. breathing slowly and regularly and v gentle stretching b4 you get up can help ease you into the day. xx
I am the same as you and all the others who have replied. Just remember you are not alone.
Sending a gentle hug.
Definitely I felt one degree under for some time before diagnosis and often felt very exhausted. It still happens at times and we learn to pace ourselves and still forget sometimes!. You will start to feel better and find ways to accept and manage your condition. There's always a listening ear ready and willing here, do remember that, take care x
Thankyou❤️
I just feel like I could sleep all the time at the moment. I wake up between six and seven in the morning feeling ready to get up and not too tired. However, by the time I have mustered up the energy to get myself up, washed or showered and dressed, taken my tablets and eaten some breakfast, I am so tired that I am falling asleep again. If I sit at the computer or the table my head goes down and I am asleep. During the afternoon, I nearly always have to have a nap and force myself to wake up or I would sleep all the afternoon. Then in the evening when I sit down to watch TV, after about an hour, I am asleep again. It is not good at all as I feel that I am wasting my life away being asleep.
Back in 2004 I started with this dreadful tiredness, it was even worse than it is now and I was told I had M.E. I used to be in bed asleep all day. My son would go off to college and my husband to work and when they came in around 5pm I was still asleep in bed. If the phone rang at the side of my bed I didn't even have the energy to reach out my hand and pick it up. Go forward to 2007 and I was told I had fibromyalgia because I had widespread pain by then. There was a short time at the end of 2007 when I really thought I was getting better and I was going out shopping like I used to and it was wonderful but it only lasted for a few months.
At the beginning of 2011, I got swine flu and was very ill with it and after that my pain and tiredness got even worse. I was referred to a rheumatologist because of this and also because I had sudden and unexplained hearing loss in one ear. After ages of going to and fro I was told I had inflammatory arthritis (as well as O.A.) and that it was most likely a mixture of R.A. and PsA. I am on Mtx, Leflulamide, Hydrocloxoquine and prenisolone (please excuse the spellings) but I am still not at all well. The pain in my back is almost unbearable and even morphine doesn't help. Back in early March I had an MRI on my spine and it was found that I have a misaligned spine, three prolapsed discs, impingement in several areas of my spine and a large fluid filled cyst at the base of my spine. I am now waiting for some investigations involving having injections into my spine and then probably spinal surgery. I am so frustrated at being able to do so little and not being able to go out for a walk. I need a wheelchair or a mobility scooter now.
I wish you all the luck and good health in the world Goodwin as this is such an unrelenting illness and seems to affect people in different ways.
Hi Hollw- Willow, thankyou so much for replying, I’m so sorry to hear you have had such an awful time , I totally get the tiredness after exertion in the morning, feel as if I’ve done a full day at work by 10am ... sending big hugs x
Goodwin69, I find my arthritis a lot at times when I know I have things I need to do. Every so often fatigue will set in and make my whole body tired. It can be a bear when you don’t want it to be.
yes I feel very ill when in a flare, I had been well for such a long time but when we had that heat it brought it all back and I had for gotton how bad RA is and how it makes you feel inside and out
I think fingers tightly crossed I am coming out of it now
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