Hello!

amberjmc

Hi everyone!

My name is Amber, I'm 26, and I'm currently undiagnosed however (finally) have my first Rheumatology appointment next Tuesday.

A bit of history, about 7 years ago I started with morning stiffness in my ankles and feet with extreme fatigue. I've put up with the joint stiffness for a very long time, and have been to the GP various times for my fatigue, (which is sometimes so debilitating I just sleep all weekend) where I've always just been fobbed off and sent away because tests like my thyroid were showing fine. The fatigue gets me down so much because, as a mother to a 6 year old and still being so young, I feel such guilt if I'm so exhausted I can barely keep my eyes open when I'm with him and some weekends just don't have the strength to take him out and do stuff.

The past year I've became particularly worse, and now I'm not just suffering with my feet and ankles, I'm also suffering especially with my hips, as well as my knees and arms. I work as a medical secretary and despite trying to get up from my desk often, my whole body is constantly stiff and I'm always limping and hobbling around. I struggle with housework now and find it difficult to do things like hanging the washing up or putting it in the machine as my arms, particularly my shoulders really hurt. I can't walk for long distances or be on my feet for a long time otherwise I get painful hips and ankles. Along with all this I can feel like I have the flu aches and pains and be totally run down. I've just had enough of suffering in silence which is why Ive decided to push for a diagnosis, because I know something is wrong.

I've had bloods done by the GP and my CRP and ESR were high, and after looking back over my bloods from the last 6 years, they always have been and they've not done anything about it. I have had my rheumatoid factor and anti ccp bloods taken and they are both normal.

I was just wondering if anyone could share what for me to expect at my appointment with the rheumatologist and any experiences? To be honest I'm not too sure why I've wrote all this haha I think I just really wanted to get it off my chest as my husband/family/friends don't really understand.

Thanks for reading

[Deleted User]

Hi Amber
Welcome to the forum sorry you are going through a rough time at the moment. We are all friendly and understanding and will try and make you feel part of the forum the most popular forums are Living with Arthritis and Chit Chat.
All the best Christine

dreamdaisy

Hello, it's nice to meet you and I am sorry you have had to find us. It sounds to me as though you have fallen into the classic GP trap of their knowing a little about a lot. From what you have told us (and based on my history) I think something auto-immune is going on but your GP is obviously unaware that there are sero-negative forms of arthritis; I have one of those, in my case psoriatic arthritis (PsA). Mine did not start where it usually does and I do not have much of the psoriasis which made diagnosis hard. It does not affect the joints in the same way as RA but it still damages them.

I was born with eczema and developed asthma aged seven, both auto-immune inflammatory conditions so for me this was merely more of the same. Is there anyone else in your family history that has had similar things happen to them? There is a known and recognised genetic component to this dross which is why it runs in families, sometimes skipping generations (my parents both missed what they gave me). It can also start out of the blue though, pregnancy is often a trigger.

List your symptoms for the rheumatologist and answer questions based on having a bad day. They may well order more bloods and possibly Xrays too. There are around three hundred auto-immune inflammatory conditions so diagnosis is often not a straightforward affair. Please let us know how you get on. DD

amberjmc

dreamdaisy wrote:

Hello, it's nice to meet you and I am sorry you have had to find us. It sounds to me as though you have fallen into the classic GP trap of their knowing a little about a lot. From what you have told us (and based on my history) I think something auto-immune is going on but your GP is obviously unaware that there are sero-negative forms of arthritis; I have one of those, in my case psoriatic arthritis (PsA). Mine did not start where it usually does and I do not have much of the psoriasis which made diagnosis hard. It does not affect the joints in the same way as RA but it still damages them.

I was born with eczema and developed asthma aged seven, both auto-immune inflammatory conditions so for me this was merely more of the same. Is there anyone else in your family history that has had similar things happen to them? There is a known and recognised genetic component to this dross which is why it runs in families, sometimes skipping generations (my parents both missed what they gave me). It can also start out of the blue though, pregnancy is often a trigger.

List your symptoms for the rheumatologist and answer questions based on having a bad day. They may well order more bloods and possibly Xrays too. There are around three hundred auto-immune inflammatory conditions so diagnosis is often not a straightforward affair. Please let us know how you get on. DD

Thank you so much for your kind reply and info DD! Yeah that’s exactly what the GP was like, she was reluctant to send me to the GP but I was in so much pain she referred me. She said “I highly doubt it will be any form of arthritis with bloods being negative but we will rule it out” failing to mention that my inflammatory markers were raised.

I’m the same, eczema, asthma but nothing else really and have never been a “poorly” person as such. Yes my maternal grandmother has fibromyalgia and rheumatoid arthritis, same as my maternal auntie and my mother has osteoporosis. So there’s a long line of arthritis history in the family. The consultant I’m seeing specialises in younger adults with arthritis and is very proactive in campaigning for it so I definitely think I have the right person to see and hopefully I’ll start being taken seriously! Will let ou know how I get on, thanks again! A

dreamdaisy

This definitely needs further investigation by those in the know rather than them that aren't. My mother's side specialised in asthma and eczema, dad's the psoriasis but as I said they were both too lazy to bother with any of it themselves. List the family history, your own and how you are being affected. Auto-immune athritis is an unwanted screaming toddler lodger who cannot be kicked out, its tantrumming behaviour has to be controlled by medical drugs: natural remedies which brag about boosting the immune system will only make things worse. The immune system is a wonderful thing for the healthy but when it turns against one it's a whole different ball game. DD