[Bonnie64]

Hi,

Look for some advice really,I have thought I might have Lupus for a while now,have been to my GP and because I also have Crohns disease she always seems to think my symptoms are to do with that,but Im not convinced they are!

My symptoms started 4 years ago after I had major surgery,before the surgery I worked have 3 kids and was always on the go.I feel as though I have never really recovered from the surgery,I have chronic tiredness,id call it an unhealthy tiredness and I have not went back to work since as I know I couldnt cope with the tiredness!
Joint pain,fingers,wrists,back knees and recently been told I have "golfers elbow"

I also have Raynauds fingers and toes go either white and numb or blue!

I do have a redness across my nose and cheeks but wouldnt say its a rash,I usually try and hide it with a bit of concealer.I also get a scaly rash above my eyelids which itches like mad.

Ive recently started to lose my hair,in the last month I have lost at least half and its still falling out,which had made me so depressed,and my scalp is also very itchy.

Im going to see my GP next week and determined to make her listen,as I am so fed up not having the energy to do anything,im 44 years old and feel like 94!

Thanks for listening!

Bonnie x

 

[cath]

Hi Bonnie,

I'm sorry you are feeling unwell, and agree with those symptoms you should indeed be seeking an explanation.

When you see your GP it is probably wise not to actually use the word lupus, but to be quite blunt and say that you have many symptoms which makes you wonder if you might not another autoimmune condition. You could also ask for a referal to a rheumatologist.

The other option is a dermatologist - given your hair loss and rash over the eyes and possible malar rash (it just looks red for a lot of us - the photos you see on the web are worst case scenarios usually). A biopsy can give concrete proof of lupus if it is positive, regardless of what bloods reveal.

Do seek answers, your health is worth it:blush:

X C X

 

[Bonnie64]

Thanks Cath,

Im going to ask her to refer me to a Rhematologist,I think having lived with Crohns for 15 years now,I know my body and think its something else!

Bonnie x

 

[beci]

Hi

Hi Bonnie,

I am 27 yrs old and have had health problems since I was a child, my GP sent me for tests and I was told I had Crohns, I was then told that I did not have crohns, but my symptoms were getting worse, to the point I am at, at the moment where I cannot get around without crutches and a wheelchair, my GP was saying that all areas had been checked and there was nothing wrong! I then saw another Dr who has been fantastic and has referred me to a Rheumy and to the Lupus clinic in London. So it is worth persevering.
I have lost all my hair and have to wear a wig, but there are some fantastic ones out there.

I hope that you get the answers you are looking for and persevere, like you say you know how you feel what does the GP know about that?

Good Luck
Beci
x

 

[Bonnie64]

Going to see a Rhuemotologist next week,my husband has private health care,so im lucky Ive got one so soon.Not sure what to expect but glad to finally see someone!

Bonnie x

 

[beci]

Hi

Hi Bonnie,

Thats great news, fingers crossed for you. Let us know how you get on, everyone recomends to take a list of your symptoms no matter how small list everything you can think of.

Good luck
Beci
x

 

[cad]

Hi Bonnie,
just wanted to say welcome and am sorry that you are feeling so rough.
I am glad that you have managed to get a rheumy appt so soon and i hope that it goes well for you.

Good Luck

Take Care

Cassie

 

[Clare.T]

Good luck Bonnie ! I hope you get some answers very soon.
By the way what meds do you take for your Crohn's ?

All the best
Clare

 

[Bonnie64]

Hi Clare,

Ive been med free since I had my first surgery 14 years ago!

Bonnie x

 

[Bonnie64]

Just back from my appointment he's taken lots of blood and says he's looking for Lupus although he dosent think it will be, so just have to wait till he gets the results.He also tells me Im double jointed,which is a surprise to me.The blood tests my GP done last week most were fine the one for inflammation was a bit high that could be because of the Crohns but the RA was fine,will be glad when I get the results,i'll let yous all know the outcome!

Bonnie x

 

[Bonnie64]

Im still hanging about here waiting on my blood test results,I dont want to be diagnosed with another illness but hope they can find whats causing all these problems!The rash on my eyelids healed again useing Eumovate but within a week its back again,not going to use the Eumovate again till I see my GP.My hair is still coming out,having to tie it back now as it is so thin and you can see my scalp,8 weeks ago I had lovely long thick hairFingers crossed I hear back from consultant soon.

Bonnie x

 

[LolaLola]

Hello Bonnie, Waiting for results is hard. I hope you get the help you need.
Sorry about the hair loss, it will come right when any inflammation is controlled.
Good job you had thick hair to start with!

I did lose a lot of hair due to Meds. so I do understand how you feel. Please treat your hair gently.
x Lola

 

[Bonnie64]

All my bloods have came back fine apart from Cholestrol which is a bit high,my bloods have to get done again in 2 weeks.So basically Im back to square one,going to dicuss this with my GP next week.It took 6 weeks to tell me this,in a way Im happy but Ive still got all these symptoms!I know Ive read of many people having a problem with diagnosis,I dont know what to do next,the Rheumy I saw is the only one in my area,he covers 2 districts,and I went private to see him!

Bonnie x

 

[LolaLola]

Dear Bonnie,
I am sorry to ask this but are you absolutely sure that the Rheumy you saw specialises in Lupus. Many have next to no experience of it.
x Lola

 

[Bonnie64]

Hi Lola,

I'm not sure to be honest,but I know he's the only Rheumy in my area,he works between two hospitals thats the reason I went private because theres a long wait to see him.But looking back to my consultation he said he was testing me for Lupus,but didnt think it would be because I had no problems with blood clotting and miscarriages,and it wasnt till I came away,I thought I wouldnt have been pregnant in the time Ive had these symptoms anyway(I got sterilised 14 years ago)

Not sure what to do next!

Bonnie x

 

[Lily]

Hi Bonnie,

Sorry you don't seem to be getting anywhere with this yet

Has your GP tested your thyroid? That's one test I think should be run considering some of your symptoms.

Another thought was seeing a Dermatologist about the facial rash, that could yield some answers?

love
Lily

 

[Bonnie64]

Hi,

Finally got to talk to my GP about my results.The rheumy has decided I have secondary joint pain from Hypermobility,he did mention hypermobilty at my appointment and I know he is a specialist but in my opinion theres no way on earth I am double jointed,I think I would have guessed beore reaching 44 years old!And this dosent explain the chronic tiredness,hair loss etc,Ive been prescribed Naproxen and dont even have another appointment to see him again

Bonnie x