Help or advice needed

[J199]

Morning everyone, I'm new to the forum so hope you don't mind the post. I was diagnosed with RA approx 4 year ago now and I'm 44 this year. I tried a couple of meds but in the end decided to try and manage it myself without any. Anyway since the middle of last year I haven't been feeling well. Lots of joint pain (bone), daily fatigue and tiredness, itchy skin (scalp, lower legs and arms), hot flushes and sweats especially afternoon and night, nausea, loose bowel and bloating. In January due to shoulder and collarbone pain I found a rubbery pea size lump in the left side of my neck just above my collarbone which was odd. There's nothing on the right side. Had some headaches just left side along with throat and ear pain. Visited go who did bloods and I was told ok. Visited gp who booked ultrasound on neck which took 7 weeks which I had last Thursday. They said a week for the results. If results come back fine would all these recent issues just be the RA and is it time to hold my hands up and say I've tried my best but it has beat me so back to the rheumatologist. I'm struggling to function daily now especially with the tiredness and fatigue. I'm still working hard and keeping myself busy but it's difficult. Any help or guidance would be greatly appreciated. Thanks for reading.

[RosieA]

I think you have answered your own question really. Don't foget that untreated RA will potentially lead to irrepreable joint damage and the fatique can be so debilitating. You are still relatively young and yet daily life seems a struggle, there is a very good chance that you could change this with appropriate treatment. I was diagnosed in Oct last year, after a relatively short period of symptoms. Read around the subject before I met the consultant - so had an idea that bloods only a small part of the picture etc. Put straight on MTX, did not hesitate, 'cos aware of implications of not treating. Now! Well although not perfect I'm in a 90% better place than I was before. So, I agree, it's hands up time. Don't hesitate, contact your RA team now before their efforts are diverted to the most in clinical need and the C9 crisis that is looming. Hope this helps in some way.

[Pippy25]

Firstly welcome to this forum, it's good to hear from you. RA/ RD is a complex, confusing disease and for as little or as long as we have been diagnosed still baffles, frustrates and continues to throw things into the mix. While we will share things in common regarding this disease we will also have differing effects, symptoms and it will impact upon us in other ways. I am so sorry to hear you are feeling lots of different things, are struggling and you are having difficulties. Sadly we are not in a position to give medical advice but think you should get in touch with your rheumy and get advice and an appointment to see them. It may be helpful to make a diary of how you are feeling, any pain, how it is affecting you day to day. Again at an appointment take any reports from test results, scan results and write any questions or concerns you may have down. If you have someone it may be helpful to take another person with you to support you at an appointment. Chase up the ultra scan result also to eliminate any thing else and take this with you. Again if you are still working I think there is information on NRAS site about this and there is a helpline who you could talk with. I have found it to be helpful on the occasions I have contacted for advice. Anyway sending my best wishes to you, take care, Pip

[J199]

Thanks for getting back and I do appreciate the support and advice. I'm going to make an appointment with my GP for a week's time to get scan results and I'm going to take my wife along and I've wrote everything down that I've mentioned in the post. Once again thanks for getting back to me.

[Mmrr in reply to J199]

Welcome to the forum.

As others have said, it sounds as if you need to be seen by a rheumatologist and appropriate treatment /medication given.

Living well, eating well and so on are good strategies for everyone, not just people with RD, but ultimately this disease has the potential to become a big problem without adequate treatment. I hope things improve for you soon.

[Sockknitter]

Often helpful to take photos of swollen joints to show Rheumie at your appointment.

[oldtimer]

A swollen gland just above the collar bone needs investigation - do you have any abdominal symptoms as well?

And it certainly sounds as if you need further advice/treatment for your Rheumatoid Disease!

It's particularly difficult when everyone is consumed with worrying about Covid19 but I do think you are sensible to be taking some active measures now.

[J199]

Thanks everyone can't thank you enough for getting back. Apologies talking about this but my bowel is loose 99% of the time and I get morning nausea regular. I tend to feel bloated but have always put that down to having my Gallbladder out many many moons ago. The lump/growth is painless and I can pinch it between two fingers. Not visible to the eye but can be felt below the skin. Pea size and feels like gristle. It was disappointing a few weeks ago as I just managed to remove my wedding ring due to the middle knuckles on my fingers swelling badly. I could feel the ring constricting on my finger and was in pain with it so had to ice my hand to eventually get it off. I can no longer get it back on as it won't go anywhere near the middle knuckle. I sound like I'm dropping to pieces haaaa. Sorry guys and thanks again.

[AgedCrone]

Once You have been diagnosed with rheumatoid arthritis the only way to stop further damage to your body is to take the meds prescribed.

I know that is not what you want to hear but sadly that is the way it is.

If you scroll through this site will will find many who thought they knew better than their rheumatologist, but eventually ended up in a situation similar to the one you have now found yourself in.

It is your choice of course but I don’t think anybody has ever faired very well for long......without taking RA .drugs

[J199]

Thanks agedcrone for getting back. My wife has informed me it was over 4 year ago when I was diagnosed. She seems to think I was only 38 at the time. I think I found it hard to accept that I had RA as I've always been active and ate well, kept myself busy all the time. One of those where you tell yourself "I'm only 38 surely I can't have that". Its been 6 year and it's definitely caught up with me now. I'm just hoping this neck lump, sweats and other recent symptoms are RA related and not something else.