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[Stephanie89]

Hello everyone

So a little about what I been going through it’s been since January of last year where the joint pain hurting so bad It makes me cry chronic fatigue body ache feeling nauseous dizzy pretty much everyday the anxiety the depression the passing out for no apparent reason the heaviness on my body and mostly in legs like I have no control of my body is killing me also this weird pain in my neck that comes and goes and this weird pain in my head like a headache but feels like my head is really light and falling asleep almost like it’s really hot idk how to explain it but it scares me a lot

I hate that my eyes are always so dry all the time which I never had that probably they constantly hurt and burn

And the jaw pain that can be unbearable

I’m trying to find answers and I’m trying to get my dr to test me for lupus but I feel I’m not being heard I’m tired of being in pain everyday feel horrible

[LupusKaren]

Dear Stephanie, have you had any blood tests conducted at all by your GP? Did anything show up there?

Unfortunately Stephanie, the journey to a Lupus diagnosis can be long and fraught, for me 12 years it took, but medicine and diagnostics have moved on.

I am sorry you are suffering so much right now, but unfortunately until you can get before an appropriate consultant speciality for investigation it is all in medic hands really.

Is your GP helpful at all?

[Stephanie89 in reply to LupusKaren]

No i havent had any blood test for auto immune test I keep asking but they say unless other signs come up they don’t feel it’s necessary but I am going to go to a neurologist due to me fainting and looking I go into a seizure that just started in August of last year and a cardiologist due to me feeling shortness of breath and heart rate all over the place

It honestly feels like everyone month is something new I been dealing with as far as the symptoms but started the end of last year especially the body pain in ny joins or bones it feels like the dizziness and fainting and getting the itchiness all over my body it can be unbearable at times it’s getting worse with doctors not knowing what it could be i don’t like being in pain and having this foggy brain all the time I just want answers to this but i don’t see them coming anytime soon

[Ianrussell69]

So sorry you are suffering a lot of people on this fantastic site have experienced what you are going through I’m not making light of it as it’s horrible but I would like to give you some encouragement wh3n you have the correct meds and dose I promise it dose get a lot easier the pain and joint swelling is in m6 case is on a scale of 1 to 10 ,10 being in bed luckily now the meds are sorted is between 3/5 please try not to get down there is light at the end of tunnel and this site has been is keeping me on an even keel. Keep posting it helps

[Stephanie89 in reply to Ianrussell69]

Thank you it’s difficult I had to stop working due to me passing out the last couples of month which I never been like this and I’m 29 it just seems like every month is something new the passing out and itchiness with te dry eyes and my body feeling really super fatigued like I can’t even carry things just since November and drs keep saying I’m fine I know my body and I feel horrible to where I can’t function right and I had to stop working it horrible to feel this body pain all the time but thank you I will keep u updated I go to my dr tomorrow and I’m hoping he will run test for me

[eekt in reply to Stephanie89]

Ask for the ANA test for autoimmune antibodies....GPs can order it, but some don't know what it is xxx

[Stephanie89 in reply to eekt]

Thank definitely going to request this because I hate living like this it’s like my life turned upside down not to mention my heart beats are all over the place I just need answered

[eekt in reply to Stephanie89]

You should see a doctor soon if you have an irregular heartbeat Stephanie, especially with all the rest that's going on xxx

[Stephanie89 in reply to eekt]

I go to the the cardiologist next month for an echogram and Holter monitor for my heart and i just did blood work ANA as well as other auto immune disease I am anxiously waiting for results

[Cas70]

This sounds just like auto immune disease - the eyes sound like you might have Sjogrens Syndrome. They can cut through a lot of tests and send you for a lip biopsy. Look on here for Your rights as a Patient - right hand column - if not give their help line a call. You will have to fight all the way I am afraid. British Sjogrens Syndrome charity on line and they have a help line. Good luck

[Stephanie89 in reply to Cas70]

Thank you

I’m definitely going to tell my dr today because this is getting to much for me I’m crying everyday too it’s to much to my body not feeling right and the drs saying I’m fine

[Cas70]

I am so sorry for you - it is so awful, I have sat in my car crying after some appointments. I am still frustrated two years on, I run a support group and every person has a similar story. Very often we are labelled as malingerers! I have become very much more confrontational with Drs. I bet you do. Please look up your rights.

[Stephanie89 in reply to Cas70]

Yes it is very frustrating but they listened to me today I couldn’t help but to cry with the pain I feel everyday and passing out is horrible now I’m just going to wait on how long it takes for the results to come back in

I just feel like my dr felt it was just nothing and I was just a person that had all these problems that were nothing but I am glad to be heard now it’s frustrating when something is going on with ur body and u just want to know what it is because u have no control over it thank you