Newbie looking for advice!

[Opal76]

Hi! I'm 37 and just before Christmas got positive bloods for RA. I've a history of what I call 'bones' which date back to 18yrs old. MRI last year showed nodules??? on my neck, constant pain in my neck, between shoulder blades and lower back, in the last 12mths knees, fingers, ankles and hips - pain is now normal for me (if that makes sense?) I have an appt with the consultant in March, what can I expect from the appt and should I do anything to prepare? I've written a timeline of events going back to 18yrs old and a pattern seems to be every 6/7yrs I get worse ... this episode is not fun and TBH I cry (when no ones looking) only my hubby knows about the tests no one else in my family knows!

[allanah]

Well I am really glad you have an appointment ! Normally they examine you, listen to your timeline and where your pain is.

With you having a lot of information for them eg MRI and bloods it sounds as though they will be able to see what they think you have.

For RA they normally start you on a disease modifying drug such as Methotrexate.

If you look on the NRAS main page there is loads of advice on being diagnosed which I found really helpful. The people on here are lovely and knowledgable and very supportive.

Good luck on your appointment and let us know how it goes?

[Opal76 in reply to allanah]

Thank you Allanah, feeling a tad lonely with it all at the mo. Not used to looking after me, my energy (what remains of it) is normally all focused on my family for various reasons. I will be sure to read up and absorb all the info on offer here.

[allanah in reply to Opal76]

It's awful isn't it, I went from a mountain climbing outdoors person to having difficulty walking with mine but we are sl different and it affects us all differently. Hopefully when u get the treatment you will feel better and less sore.

Don't feel alone though as we are all here for you. You can also talk totheNRAS helpline if u just need someone to talk or listen, it's on the main page. I can honestly say they are wonderful and I talked to them a lot at the beginning and again only a couple of weeks ago.

Tiredness and fatigue is one of the worst problems for me too! But it does improve the more they get you controlled.

So they think you gave RA or are you waiting on a proper diagnosis ?

[Opal76 in reply to allanah]

I suppose I'm waiting for a proper diagnosis, my bloods came back positive in Nov and the MRI in March last year showed nodules on my neck - I had to cry in the Dr's chair to get the MRI, that morning I awoke and stretched in bed and then heard a God awful clunk in my neck, my husband heard it too, then my neck and skin between my shoulder blades went bright red and felt warm to the touch ... I'd been struggling with restricted neck mobility for months but this was the last straw ... when the MRI results came back my Dr suggested Naproxen and physio, then acupuncture - nothing worked. That's why I went back in Nov and the Dr finally suggested blood tests. What's beating me up at the mo is that I've read that RA is autoimmune and my beautiful 9yr old daughter is Type 1 Diabetic with Coeliacs Disease ... we always told people she got it out of the blue as no one in the family suffers with either ... now I'm worried that it's my genes that have done this to her ... it's one of the questions I'm going to ask the consultant

[allanah in reply to Opal76]

Yes that was a worry for me to but my doc said it's familial not genetic, so it can be in families but you can't pass it on! Don't beat yourself up lease, you always want to blame yourself for your Lisa illnesses but sometimes it just happens. Would u not have had her if you ha RA ? I think not, she is a blessing and try not to place guilt t your door.

It's hard right now but when you get treated you will feel so much better xx

[Hidden]

Hello

Just take your list, try and shorten it, the specialist will just need the salient points of your condition

Should imagine he may ask for xrays and make an appointment for scans, He may also take preliminary scans of hands and feet possibly they may take bloods and medication history

It is all basic nothing to worry about.

The above is a general appointment type, it most probably will be different.

Remember I am no Doctor

BOB

[tilstongal]

Oh Opal76 I am really sorry you are positive for RA and totally understand how upset you are. Please remember that RA is a spectrum and everyone with it is different. The treatments these days are nothing short of miracles and can enable a virtually normal life - a huge change from even 30 years ago when the prognosis was fairly grim. I hope you get a good Rheumatologist and team that makes a huge difference and you timeline will be very helpful for him or her. Pain management is a lot better than it was and some of the newer drugs are really good. I'll be thinking positive thoughts for you and hoping for swift effective treatment.

Tilstongal

[julie_warwick]

Hi opal , I'm new to this too and understand how scary it is and how you think you're alone. this site is great , lots of support from these lovely people , at my 1st appointment ( with the nurse ) she went over my history , arranged a chest xray and respiratory function test , both routine before starting methotrexate which seems to be what they give most people 1st , she was lovely and gave me lots of info. about my treatment. nothing to worry about , you'll be fine , it seems to be trial and error getting the treatment that works for you , we're all different , I'm still at that stage , I sympathise with the clunky neck , it's not nice. you're not on your own and there's always someone here to help or just to have a moan at ! hope all goes well for you x

[Hidden]

Sorry you are suffering so badly you poor thing. Have you been prescribed any pain killers and anti-inflammatories yet? If not you should see your GP and get the best they can offer until March. This seems a long time for you to wait - maybe your GP can phone the hospital and get them bring the date forward for you? If you can it would probably help to tell the rest of your family what you are going through so you can be yourself with them and not have to conceal your pain. If it's any consolation I've never had the kind of pain I had in the first year before I was diagnosed and started DMARDs. I'm sure things will improve for you once you have a formal diagnosis and treatment.

[Opal76]

Thankyou everyone, such lovely words of comfort and advice. I'm popping ibuprofen like there's no tomorrow at the mo, it takes the edge off the sharp pains but not so much the dull ache. Sleep is a problem at the mo, I think I wake every time I turn in my sleep. The appt is the 10th March and it's slap bang in the middle of school pick up time so think I'll have to tell my sister in order for her to help me out. Thanks again, you're all so lovely