Rheumy tomorrow eeek

[Susielouberry]

So next rheumy appointment is tomorrow, hair is now falling out very fast, pains r coming and going, headaches r a pain and all this is sending my anxiety through the roof yet still no medication been prescribed. Any tips of advice for appointment tomorrow please? Xxx

[puneet123]

I think it's a good idea to make note of all these symptoms and how often they happen. Tell the doctor you are finding it difficult to cope and can't take anymore if they still don't prescribe medication after reading your diary. I hope you get well soon. Xxx

[Shaysuekirk]

Yikes! I still have the symptoms with meds, but they seem to come and go much faster. Now, if I take a rest, I will wake up refreshed vs still struggling. Hope they can help.

My tip is to write down ALL of your symptoms so you don't forget to mention any. Also, make sure to point out which are your most annoying. We kind of go by what's bugging me the most at the moment. My Dr. doesn't seem to make much of the hair falling out. It drives me crazy, but doesn't seem to bother her at all. It can be frustrating.

[Sara_A in reply to Shaysuekirk]

What meds are u on that make u feel refreshed???!!! Please tell me!

[Shaysuekirk in reply to Sara_A]

haha. I don't stay "refreshed" for too long. But, at least I'm not a constant walking zombie. Gabapentin and Plaquenil.

[Sara_A]

Ah I'm on hydroxychloroquine and mycophenolate and steroids amongst many more for other related sle and aps issues. I've previously been on gabapentin for nerve pain but not on it anymore. Tried it after my son was born 4 yrs ago and I was mega spaced out so couldn't tolerate it even tho I'd been on practically the highest dose for several yrs before I had him.

I'm just so exhauseted at the moment feel like I just want to sleep all the time.

[Mintychristine]

Sorry Susie no medical advice but your hair.. couple months ago my hair was thinning ...devastated but did some research when I was young 18 suffered alopecia so double anxiety thought I was doomed ( none since then) bought nioxin diaboost some shampoo and supplements it's loads better There's loads of stuff out there read all the reviews and try not ti get too stressed Regarding your pains etc Write everything down that helps me they don't mind Its stressful trying to sort all your story out but if its down on paper do dates etc. It's their responsibility to chronicle all your problems with when it started for how long so its not rude Good luck

[Paul_Howard Partner LUPUS UK]

Hi Susielouberry ,

How did you get on with your appointment?

[Susielouberry in reply to Paul_Howard]

Sorry I'm only just getting back to you been dealing with poorly children. He has now decided that my blood result was a false positive and that it is fibromyalgia that I have so god knows what is going on now but he has discharged me, didn't know that either until I got my letter through that he sent to the gp xx

[Paul_Howard Partner LUPUS UK in reply to Susielouberry]

Hi Susielouberry ,

I'm sorry to hear that you have been discharged and that this wasn't properly communicated to you. Were you offered any treatment for the fibromyalgia diagnosis?

If you are unsatisfied with the diagnosis and treatment plan, you can ask your GP to refer you to another consultant for a second opinion. It may be best to ask for a referral to a rheumatologist who has a specialist interest in lupus. If you'd like to let me know what area you live in, I can provide you with information about any lupus specialists we know nearby.