The surprising symptoms of Rheumatoid arthritis!

The surprising symptoms of Rheumatoid arthritis! In this post I will reveal the symptoms (or lack of) that may surprise you. I spent many months doing research on my symptoms because I knew something wasn’t right.  Despite doctors telling me everything was fine and my bloods were normal.  I was in a lot of pain pretty quickly. However I was not going to allow myself to start thinking it was all in my head. Although very secretly this is exactly what I was starting to believe.

All of the research I was doing was pointing me to autoimmune diseases, rheumatoid arthritis to be precise.  A lot of my symptoms matched perfectly.  However, not all matched.  The doctors doubted too, I started to become confused.

If this sounds like you and your symptoms sound like rheumatoid mostly but don’t fit the criteria for diagnosis exactly. I am here to tell you that they don’t have to.  Every disease is so individual; we are humans and are all uniquely different.  There are obviously lots of similarities that you will have, symptom wise. However you absolutely do not have to have all text book symptoms.

This post is dedicated to everyone who is struggling to get a diagnosis because their symptoms don’t “fit”.  Everyone who is struggling with their general practitioner. GP’s want to tick boxes before they refer to a specialist, but when they can’t they send you home again without any help or hope.  I was there, I understand and it sucks, but nothing goes in a straight line.  I’m here to say that I hear you, and to please be kind to yourself along the way.  This is your journey and no one else’s.  I really hope the following information helps.

To be clear from the beginning and for the purposes of this post I was diagnosed after x-rays, an ultrasound and a detailed medical history being taken.  It took a long time and lots of feeling like a hypochondriac to get there, but here I am.  I have problems in my hands, wrists, elbows, knees, ankles, feet and jaw and if you wish you can read my diagnosis story here.

Most Websites and books outline the tell-tale signs of rheumatoid arthritis as being:

• Joints that are red and warm to the touch
• Swollen joints
• Joint pain and tenderness
• Stiffness
• Fatigue
• Symmetrical symptoms
• Positive blood tests

Lets break each of these down.

Joints that are red and warm to the touch.

Honestly I have only had redness a couple of times, and always on my knuckles.

I have experienced warmth but only in my knees, no other area that I have noticed has ever had excessive warmth.

So this very first point shows that you can have rheumatoid arthritis without all of the common signs and symptoms.

Swollen joints

 Swollen joints are something I did get in the beginning and do very occasionally now.  However even in the beginning it was very sporadic and the swelling was never hugely significant.  My swelling would be slight on comparison to what doctors were looking for and would never stay for more than a couple of days.  I can’t tell you the amount of times doctors have looked for swelling and found none, cue the glances of disbelief and the start of the doubting yourself.

Joint pain and tenderness

This is something I did have a lot of, everywhere.  It is worth mentioning though,  that although pain and tenderness is on the list on every website I ever looked at, and every book I’ve ever read it is one that I feel doesn’t hold much weight with a lot of clinicians.  Not because it is insignificant, actually the opposite is true, but because it is your word against the doctors.

There is no test to see how much pain you are in.  If you go to see a doctor with no swollen joints, no positive blood tests and tell them you are in a lot of pain, do not expect to get much understanding.  This may seem harsh but it is a definite reality and one I have encountered many times unfortunately.

That being said, it is a very strong indicator of disease. Although living in pain is something you get used to, it isn’t something you SHOULD live with.  You know yourself better than anyone else, do not doubt yourself.

Stiffness

Stiffness is one of the symptoms that annoys me the most.  It is not debilitating like the pain can be but it is very uncomfortable.  It affects you in the morning, for at least 30 minutes, probably longer.  Something that may not be so well known however is that the stiffness can also get bad at other times of the day too.

Like after sitting for a while for example. This can come as quite a shock, one minute you are quite happily sitting down and relaxing, maybe watching a film, and then the next minute, when trying to get up, you resemble the tin man from the wizard of Oz.  For me also, I get bad stiffness after exercising. It is normally more noticeable when I am out of the house and I need to get back in my car and drive home after exercising.  Getting out of the car and getting moving again is a real struggle, something to bear in mind.

Symmetrical symptoms

This was the case for me, but gradually.  So in the beginning my hands were the first to bother me, but to be honest I have had pain on my wrists and hands for as long as I can remember without an explanation, so it didn’t ring any bells.  Then it was my ankles but one at a time, the left one was bad for a few weeks before the right one joined in.

The same happened to my feet.  The rest however did happen symmetrically. Now, every Joint that is affected is a matching pair! Although I know that this is definitely not the case for everyone when starting out.  I know of some stories where people would have pain for months or even years before the matching joint joined in, so don’t think that everyone who has RA has symmetrical joint pain to start.

To add to that I would also say that even now I sometimes have flare ups where one elbow is worse or one knee is playing up more than the other.  It really is so individual.

Positive blood tests

This is a big one, especially if like me some of the classic symptoms were sparse at times.  If you have a positive blood test for inflammation or rheumatoid factor, the doctor is more likely to sit up and take you seriously.

I am sero negative, which means I have NO blood tests that come back positive for anything.  This can a real problem when trying to get a diagnosis, but please remember that having negative bloods does not mean that you do not have the disease, so do not be fobbed off with anyone telling you that the negative blood tests mean no symptoms.

Fatigue

Do not underestimate the impact that fatigue can have on your health.  It is so debilitating, and is much worse than just being tired.  I have had two children so know what sleep deprivation is, but fatigue is worse.  Worse because no amount of sleep can make it better. It is like you are walking around in a fog.

For me, in the beginning, my fatigue came and went.  So if you think that your levels of fatigue aren’t too bad, or are only there occasional, so therefore you can’t possibly have the disease, then I’m afraid that’s not true.

This isn’t meant to be a negative post but I just feel that there must be so many people that are in the same situation that I was.  I really want you to know that you are not on your own and that your symptoms are not all in your head.  The truth is you DO NOT have to have all of the text book symptoms to have RA.

My advice is to document everything, all of your symptoms, when they came, how long they stayed, how bad they were etc.  Create a journal of it all and take it to all appointments you have.  Never give up fighting, you are not being a burden, you are taking control of your health.  You deserve to be heard and you deserve kindness.

I really hope that this helps.

Wishing you lots of health and happiness

Laura x