Hello folks, first rheumy appointment soon so no diagnosis/ plan just yet.

[flap7]

Long post - sorry! Hello all, I've been lurking for a while absorbing all of the great information and support available in this community. I'm 46 but have experienced many diffuse symptoms over a number of years, including fatigue, fever, joint pain, abnormal periods, miscarriages etc.etc.. Just got on with things as you do! 🎢

Last year I injured my back at work and I believe this and other stressors induced a flare that has affected my right side quite significantly as well as flattening me generally. Along with all of the other delights, I now also experience quite savage migraines which come complete with sharp stabbing pain in my bowel, vomiting, and abnormal vaginal bleeds. I have neuropathy in both feet and what appears to be Raynaud's syndrome signs in my hands and feet. ☈⛈🌧 I used to love being outdoors and walking for miles in the sun but I now cannot be outside for more than a few minutes without burning, prickling pain, bright red livedo on my legs, a raised rash and swelling in my face and feet. Factor 50 head to toe. After stamping my feet at being told that it was all due to chronic pain from bulging discs and that I would have to go to pain clinic and live with it, GP ordered further tests to be sure/placate me (hehe). ANA 1:640 and positive dsDNA. GP is now treating me very differently and is now saying "autoimmune" and "lupus"9 rather than 'chronic pain' and 'anxiety'. I recently went through 30 years of med notes and discovered that I had a positive ANA in the 1990s at the same time as having GI and joint problems but it was never investigated further.

First Rheumy appointment in September and I think I am prepared. Lots of pictures, relevant medical history compacted to one page and an attitude that I hope will be positive in terms of treatment plan, compliance and looking to a better future. I have gone from having 3 jobs and the start of a new vocation that I worked really hard for to barely being able to function. Onwards and upwards!👣👣 Thanks to you all, I think I am ready for my appointment but any other advice will be gratefully and respectfully received 😊❤

[whisperit]

Welcome flap7,

From the look of it, you've already got a pretty good idea of the way things work. What I always say prior to any first specialist appmt is to expect them to have a fairly standard set of questions, so you may not get to say everything you might hope! I try to prepare a little list of priority questions - the things that have most troubled me - and a list of minimal expectations for what I want next. For me, there is nothing worse than leaving a long-awaited appointment without knowing what is going to happen next - and who is going to be doing it. I've had several where the consultant says something like, "Well, we could consider getting an opinion from the pain clinic..." and leaving it there. I now make sure to stop him (Ive had no female consultants!) at that point and ask, "So how would that happen - are you going to write to the pain clinic, or does the GP do that or is it just something to consider at a later stage....?" Otherwise, these things often seem to get lost....but then you probably know all this.

At least you have a clear direction at last?

x

[flap7 in reply to whisperit]

Thanks for your reply whisperit. I appreciate the advice - it sounds like the voice of long experience speaking. Looking at the letter, I will have 20-30 minutes with the (female) consultant so the way that you describe the appointment unfolding is really helpful. I'll try to be succinct and leave her alone to ask questions and examine. I'll save my questions for the end. My dear, long suffering hubby will be coming along to help me remember things as I now have a very foggy brain at times of stress or tiredness.

I think that mobility and fatigue are the most pressing issues for her to help me address. Two years ago I would do a 10 mile walk and have minor aches the next day. Last year I was still managing 3-5 miles per day with pain that I pushed through. Now, if I do a bit of gardening or an hour of walking, I am flat out in agony for the next 2-3 days. I now have a stick that I would gleefully burn if it didn't help me so much 😑Physio returned me to my GP as she was concerned that I have foot drop and issues with gait. Here's hoping ☺

[whisperit in reply to flap7]

I really sympathise with the fatigue and poor effort tolerance. I do think that many medics don't appreciate what a huge impact this symptom in particular has on life, when you have to plan each day to take account of details that ordinary mortals take for granted. Things like working out how far it is from the car park to the front door of the hospital, and whether that means you will have to leave picking up your prescription till the next day, and posting a parcel till the day after - things that previously you would have done in one afternoon without even thinking about it.

Hope all goes well anyway x

[Paul_Howard Partner LUPUS UK]

Hi flap7 ,

I'm really pleased to hear that you have already been finding the LUPUS UK community forum helpful - welcome!

It sounds as though you are well prepared for your appointment next month. If you haven't seen it already though, you may be interested in our blog article about getting the most from medical appointments, in case there are any other helpful pointers - lupusuk.org.uk/getting-the-...

If you need more information about lupus and LUPUS UK we have a free pack which you can request or download at lupusuk.org.uk/request-info...

Please keep us updated with how you get on.

[flap7 in reply to Paul_Howard]

Thanks for the warm welcome Paul 😊 The forum has been really helpful. I have already requested a pack and am looking forward to receiving it. Thanks also for the link, I will have a read through the information.

Keep up your great work! 💪

[leslieliesel]

My Bloodwork is coming in day by day...I can see my results before I see the dr on my patient Portal....I did have my first Rhuemy appointment...after a high ANA 1:1280 result, and horrendous rash on my chest and back. She said Lupus straight away and did more tests. She gave me Hydroxychloroqine..and I will see her next week.....So, I am 62....I have been coping with various symptoms over the decades that make sense to me.....yet I look and act HEALTHY, so I gave up on trying to have the drs take a second look...the RASH got their attention!!! My Drs are great, yet after a while I stopped wondering if there WAS a reason to feel so crummy...yea for my horrid RASH!!!

[flap7 in reply to leslieliesel]

Hi leslieliesel, I'm so glad that you are finally receiving treatment and I hope that you will begin to feel and function better without struggling so hard now. I totally get the whole acting healthy thing - you actually really begin to believe it's in your head when you go to the doctor knowing there is something wrong but you are continually discounted and end up feeling you are a nuisance. I'm just sorry it had to be an angry rash and crazy bloods that got you noticed! More power to you, keep going ❤

[leslieliesel in reply to flap7]

Thank You Flap7......I have had so drs say that I am catastrophying (sp?) or looking for zebras when there are only horses....Now I have a DX...now I will be helped xoxox