Fat I’ll waiting for a diagnosis

[Natz36]

Hello me again.

It feels so good to be able to talk to people who are not judging me regarding the lupus and I’m still yet to find out what’s happening.

So my left eyelid is kind of inflamed, no pain just it’s noticeable I spoke to my doctor she said to just make sure it doesn’t get worse and my vision doesn’t get worse.

She has also booked me in to check if I’m b12 definition that test will be done on Thursday so she’s actually really helping.

I had a restless night. My left foot had swollen and the tingling was just uncomfortable didn’t sleep well at all.

I have took pictures of my eye and foot and will keep them for when I have my first appointment with the rheumatologist.

My doctor has told me to take ibuprofen if my foot swells again x

[stiff19]

You have a good doc to say make sure your eye doesn’t get worse, for 10 months mine has been worsening told Bell’s palsy then not Bell’s palsy then doc ludicrously blepharitis and today well we don’t have all the answers.

Make sure when you see rheumy you get to tell them everything and not just answer questions and get them to look at photos 🙏

[Natz36 in reply to stiff19]

I’m so sorry and I hope you get answers soon . I have been taking pictures of everything like my foot was bad last night really made me unsettled didn’t sleep well my doctor said always take ibuprofen until you see the rheumatologist x so before I go to bed I’ll be taking some ibuprofen . I will definitely see my options if I feel it’s getting worse but I’m not noticing any pain or like it’s getting worse so I’m okay .

I’m scared the rheumatologist will say there’s nothing wrong with me but I have lots of pictures and have noted symptoms I get. X

[stiff19 in reply to Natz36]

I am glad you are taking pictures and keep doing so and a diary of what and when the more information the better.

The way things change and come and go can make it difficult but mine has worsened since rheumy discharged me and doc rather than look just tells me I’ve seen rheumy and had tests, which in her eyes seems to make me better when nothing further than the truth. I wish you well with appointment and you may have a good positive experience which I sincerely hope you do, but be armed, I wAs not and now I have evidence and worsening I can’t get a referral and I am fighting a losing battle. On here you will get some good advice so you are in the right place I wish I’d found it before my appointment then I may not be in this position as I have more knowledge now than I did of what to ask and do .

Best wishes x

[Natz36 in reply to stiff19]

I’m so sorry about that 😢. I don’t understand why anyone would say they are going through so much pain etc and be discharged or just told it’s nothing. I actually fear the doctors and the whole system because I know myself I haven’t been right for a long time x

Yes I have lots of pictures and symptoms. X

I haven’t experienced any pain as such just sometimes shoulder pain , it’s mostly swelling and very bad raynauds.

Balance issues and dizziness but I’m having my b12 levels checked and will get my results next week. My doctor has booked it in for this Thursday.

It’s the fear of the un known that scares me the most once I have something on paper I suppose I’ll deal with it all a lot better x

Take care of yourself

Speak soon x

[stiff19 in reply to Natz36]

Yes it’s understandable you’re anxious about first rheumy appointment. I wasn’t with mine , I was so certain that I’d get the answer for my problems so in hindsight I’d say a bit of being anxious is a good thing but don’t let it worry you too much and as kayhimm says express your concerns and ask questions. Yes the unknown is one of the hardest things , and you know yourself what’s right and what’s not, so be sure to tell them everything.

Best of luck to you, take care ,

X

[KayHimm in reply to Natz36]

It certainly sounds like you have a caring doctor. The ED doctors were clearly concerned about your facial rash. People get facial rashes for lots of reasons but yours may have been distinctive. So even though your initial labs were negative, they have to run a lot of tests.

It is a hard time with lots of uncertainty. Don’t hesitate to ask questions or express and concerns. The first rheumatology appointment can cause worry. We have all been there.

K

[Natz36 in reply to KayHimm]

Thanks is there anyway I can post the picture with the rash which lasted for quite a few days x also is it normal to have eyelid swelling it’s always my left hand side that this happens ? Thanks

[KayHimm in reply to Natz36]

People post photos all the time. I have trouble posting articles, but I thought it was my iPad. It could be you can only do it with a computer.

I wish I could help you with the eyelid issue. It is not a familiar symptom to me. I bet someone on here will be helpful, though. They have to figure out exactly what causes these things even if they know it is autoimmune. It is pretty complicated. But your doctor has clarified for you to let him know if there is vision change, right?

You mentioned swelling in your feet. Is that your ankles?

XK

[Natz36 in reply to KayHimm]

It’s my feet but I’m not sure if that is the raynauds causing it as my feet get so cold then extremely warm like my body can’t cope and the tingling is so uncomfortable but ibuprofen has helped a lot .

I know whatever it will be will be treated . I have my blood test tomorrow for b12 deficiency and I will get my results next week when I have the appointment with my doctor.

I saw how to post the pictures but I feel ashamed and embarrassed as I was obviously going through a bad time and don’t look right . I don’t like myself so seeing the pictures makes me feel worse x

[KayHimm in reply to Natz36]

Good description for your rheumatology appointment. Glad the ibuprofen helps. Take your temperature during flares - very important information.

If you aren’t comfortable posting your photo, that is fine. But we have all looked « not at our best » here and will not criticize but help as much as we can.

Xk

[Natz36 in reply to KayHimm]

Thanks so much . I have lots of photos even the slight bruising on my legs from itching x

I will think about the pictures of the rash.

I got my letter today for the appointment so I’m just waiting now for a date x

[KayHimm in reply to Natz36]

Look in the left hand hand bottom corner when you start a post. You will see a camera.