Tomorrow’s first rheumatologist consultation

[Gottarelax]

At last the first appointment is nearly here. While very relieved, I’m starting to feel a little daunted as I have so many symptoms, not necessarily all related and I want to make sure that I cover the ones that are most likely important.

Pretty much all my joints hurt. There is a pin pointed pain that occurs on movement (which can be minimal) and in some joints is enough to make me crumple.

Pressure points on shoulder joints and cervical spine that are very painful to touch.

Stiffness, most joints all day (like frozen shoulder)

My limbs generally ache and some pain appears to be in muscles but may be just radiating from joints.

I have a sharp pain around my left kidney that comes and goes (urine dipstick for protein nitrites, leukocytes and blood shows nothing amiss).

Headaches, often in temples.

Fatigue which may be due to broken sleep as in pain at night - my body feels like a lead weight to turn over in bed and i can’t stay in one position long

Tingling in legs and hands easily become numb/ pins and needles.

Maybe reduced grip strength - dropping things a little more.

Lump in throat (like food stuck).

Dry eyes

Is that all worth mentioning? Thanks.

[Hidden]

Definitely mention all symptoms.

My RA was just joints but later I developed all you have mentioned and was also diagnosed with fibro and PsA. Miss nothing out . Good luck x

[Gottarelax in reply to Hidden]

Thank you. It was actually useful to write it all down… think I’ll print the list out

[Hidden in reply to Gottarelax]

Good idea . The problem is we learn to adjust or just live with it and forget this isn’t normal.

[Amnesiac3637 in reply to Gottarelax]

Print out the list and hand it over (keeping a copy for yourself of course) and go through it with the doctor so nothing is missed. Any of these signs and symptoms can be important for a diagnosis - even it’s not completely related to RA it could have a bearing on overall treatment. Good luck!

[Oshgosh in reply to Gottarelax]

I find it helpful to write symptoms down, also write down any questions down. Take a pen to write answers down.Remember no question is stupid . Hope your consultation goes well .

[helixhelix]

Write a bullet point list. I have numbered the ones I think most important and order I would put them in. Hand it to rheumy. And then be prepared to push for a view and ask questioms.

1a Pretty much all my joints hurt. (There is a pin pointed pain that occurs on movement (which can be minimal) and in some joints is enough to make me crumple. - that is more symptomatic of osteoarthritis, leave to last!)

Pressure points on shoulder joints and 5. cervical spine that are very painful to touch. (Large joints are less implicated, so again mention this at the end of list - but cervical spine important)

1. Stiffness, most joints all day (like frozen shoulder)

6. My limbs generally ache and some pain appears to be in muscles but may be just radiating from joints.

I have a sharp pain around my left kidney that comes and goes (urine dipstick for protein nitrites, leukocytes and blood shows nothing amiss).

7.Headaches, often in temples.

2.Fatigue which may be due to broken sleep as in pain at night - my body feels like a lead weight to turn over in bed and i can’t stay in one position long (not being able to stay in one position is very important)

3. Tingling in legs and hands easily become numb/ pins and needles.

8. Maybe reduced grip strength - dropping things a little more.

9.Lump in throat (like food stuck).

4. Dry eyes

Fingers crossed for a good rheumy!

[Gottarelax in reply to helixhelix]

My goodness helixhelix, thank you so much for going to the trouble of stratifying my symptoms in a helpful way. I will reorder and take a paper copy with me!

[Mmrr]

Do you feel hot at all ? I don't see it on your list but a common symptom, feeling hot all over and / or hot joints?Best wishes for tomorrow.

[Gottarelax in reply to Mmrr]

Thanks for reminding me!...I get hot sweats often at night - feels different to menopausal hot flashes which were completely resolved by HRT. Before going on naproxen they I would wake up absolutely drenched. Now I still get hot but not quite as bad. My shoulders and knees are sometimes to touch when pain is more intense.

[Runrig01]

You seem to mention more about the larger joints, and struggling to turn in the night. I wonder if it is a spondylarthropathy. I would wake every night around 2-3 am with severe rib and pelvic pain that would ease once I got up. Also expect them to ask what relieves it, especially exercise. Inflammatory pain improves with exercise, wear and tear worsens with exercise. The tender points you mention could suggest fibromyalgia, but you have enthesis in these areas , which is where tendon joins bone that may explain it, but it is also classic sign of fibromyalgia. The numbness and tingling can also be a symptom of fibromyalgia. As others have said list your symptoms as well as any questions you want answered. Being your first visit, you are unlikely to receive a diagnosis, but will probably have further blood tests and scans arranged. Good luck

[Garnacha]

Just wanted to wish you all the best on your first appointment, I know how daunting it can feel x

[Jackie1947]

Yes of course. Make a note of things you want to say.

[AgedCrone]

Most likely your doctor will lead the consultation….so as you answer her/his questions you will be able to mention each of your symptoms…& how they affect you.Take the list of symptoms you have written here with you.

You have presumably had blood tests etc prior to this appointment….. so as

unfortunately these days NHS appointments can be quite short……do try to answer the consultants questions accurately.At a first consult it really is necessary for the doctor to get a complete over view….so do try not to interrupt as things jump in to your mind….have your list of what is bothering you most …& refer to that - to answer the doctor’s questions …..so that he gets an accurate picture of your symptoms & how seriously they are affecting you. The sooner he can diagnose what you need, the quicker you will get some help & the right treatment.

Good Luck…& don’t despair…..I hope if you are diagnosed with RA you get some successful medication very quickly….these days there are many successful drugs available …& most people do get the right treatment pretty quickly.

[Hidden]

Take a list & tell them ALL your symptoms etc. Good luck x

[stbernhard]

Good luck with your appointment. Did you know NRAS have a booklet "Make the most of your first appointment". nras.org.uk/resource/gettin.... Maybe there's something in there which might be helpful to mention to the consultant.

[Lolabridge]

Loads of excellent advice. Definitely print out 2 copies of your list and give one to consultant.All I would add is that you try to get your consultant to understand how it affects your daily life, especially if he/she does not ask!!

Good luck 🤞🏻

[Sheila_G]

Yes. All symptoms worth mentioning. Write everything down before you go because nerves might make you forget something. Don't worry about going. The Rheumatologist is there for you, to make your life better. Take a deep breath and relax. Good luck.

[jadean8743]

I have a lot of back pain but my rheumatologist said RA does not affect the back and that pain is osteoarthritis.