Sick and tired of life.

[beautifulinside]

Hi there,

I am new to this site but I found It in desperation as I am at my wits end with my body.

A quick description of myself is that I am 22 years old and have been suffering with lupus like symptoms for as long as I can remember however they have gotten severe in the last 6 months. I have what I'm sure is the butterfly rash on my cheeks and nose but mine comes and goes so it is not always present and is usually much worse on one side of my face than the other, I have 7/8 mouth ulcers at any given time, unexplained high temperatures, bad hair loss, Raynaud's syndrome in my toes and hands, and fatigue. I have however not been diagnosed by a GP etc.

I have been to see my GP many of times over the past 6 months about all of these symptoms, they have diagnosed the Raynaud's and the hair loss, but have not and will not help me with the other symptoms that I am experiencing, especially the rash on my face. I have practically begged for them to do any blood test to see what would come back, however they would not test for anything apart from thyroid (which came back normal). I have told them on countless occasions that lupus runs in my family and my aunt has the exact same symptoms as me, but they do not want to hear it and are very dismissive.

I am just so depressed about everything as I feel as though things are never going to get any better and I am stuck like this, constantly feeling ill and looking like death too. I try to stay positive but it has all just got too much today and I just feel like there is no hope.

I live a very secluded life as I cannot be in the sun or the heat for too long as the rash plays up but also I begin to feel extremely tired and just ill in general. I literally sit at home everyday wishing for it to be night time so that I can go to sleep. I still manage to work a little every day, but I am a receptionist so appearance is everything and my appearance is just completely overshadowed by the butterfly rash.

I was just wondering if there is any advice anybody could give me with dealing with my GP and with the symptoms?

P.S I know this wasn't quick so sorry about that haha.

Thank you for taking the time to read this.

[Paul_Howard Partner LUPUS UK]

Hi beautifulinside ,

I'm sorry to hear that you have been so unwell and that you are struggling to get a diagnosis because of your dismissive GP. If your GP is refusing to do blood tests for lupus or refer you to a rheumatologist despite your symptoms and family history of lupus, I would recommend that you change GP. You can find information about changing GP here - citizensadvice.org.uk/healt...

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

I'm glad that you have found this forum so that you won't feel so isolated. You may also find it helpful to go along to a support group meeting. We have groups around the UK and you can find your closest at lupusuk.org.uk/regional-gro.... We also have a group specifically for young people (16-26) that meets in London - lupusuk.org.uk/lupus-in-you...

[beautifulinside in reply to Paul_Howard]

Thank you so much for replying!

I think I am going to have to move GP practices as I really don't find mine helpful or interested in my issues. I'm sure they think that I'm being a hypochondriac! I'm going to make one last attempt on Monday to try and get a private referral to a specialist, and if that doesn't work then I'm out of options and will have to move surgeries haha!

Thank you for the info, I have downloaded the pack and I think I would really benefit from meeting with others who deal with this very strange condition! I wont feel so alone and isolated then.

I went to work last night which is why I didn't reply till now, and it was horrendous. I got so stressed out that I've made myself flare up and my facial rash is worse than ever. I also just feel extremely drained and exhausted. Do you have any advice with dealing with the facial rash? (that's if you get this symptom)

Thanks again for getting back to me.

[Paul_Howard Partner LUPUS UK in reply to beautifulinside]

There can be a few triggers for a facial rash in lupus, as it is a symptom of a flare for many people. Triggers can be exposure to UV, stress, a virus or something else. Often the best thing you can do to try to prevent the facial rash is to be aware of what triggers it for you and try to avoid or protect yourself from those triggers as best as you can. If it is a persistent rash then sometimes a treatment can help to soothe it. You may want to discuss treatment options with your doctor. More information about skin involvement in lupus can be found here - lupusuk.org.uk/wp-content/u...

[whisperit]

That sounds rotten, beautifulinside,

It might well be that changing your GP is the best advice. In addition, this is what I have found helps (apologies if it is all too obvious):

- I try to be really disciplined and have just one or two main points to make when I am presenting my symptoms and saying what I want. They seem to be most likely to respond to physical symptoms that are directly related to a specific diagnosis than to generalised "unwellness" (especially "unwellness" that is associated with feeling low in mood. That's just too messy, and some GPs will get distracted into discussing my mental health/stress etc.)

- So I might tell them about shortness of breath first and give a definite quantification of how SOB I am (for example, I might say that last week I was able to walk to the corner shop without stopping , but since Thursday I can only manage the postbox). Being clear about why I think my symptoms might correspond to my auto-immune disorder helps.

- I try to have clear objectives for each consultation e.g. "I want a referral to the rheumatology team from this consultation" and I tell the GP this. Several times, if necessary! When you say that you have "begged for any blood test" maybe it would help if you were able to specify exactly what you want, rather than being general?

- If s/he says that a specialist opinion is not appropriate, I ask why - in the nicest possible way - and ask what they think is going on. I also ask how I should manage the situation and when I should return to review

This might not be helpful at all - but you deserve to feel that you are being listened to. Good luck!

[beautifulinside in reply to whisperit]

Hi whisperit!

Thank you for replying to me.

That's really good advice, I'm going to try that on Monday when I make a final attempt to get a referral to see a private specialist! I think I will stick to two main problems and try to be very assertive with the doctor that I see as I'm sure they just think I'm being a hypochondriac!

I asked them in the past for a referral and I got the same answers back from each GP at my surgery, that "you do not need a referral as you don't have all the correct symptoms to see a specialist" or "your main symptoms are to do with the skin so we cannot refer unless you have internal problems"

So that was that! I've just lost complete faith in healthcare, it seems to me its more about money than if somebody is actually very ill and needs a referral etc! who can argue with a doctor ey? since they are the ones who are meant to 'know best'.

Again, thank you for your advice I'm very thankful!

[whisperit in reply to beautifulinside]

I guess the most important thing is that *you* should feel satisfied with your GPs' decisions. You say that they have diagnosed Reynaud's and hair loss as stand-alone conditions, but what is their explanation for the facial rash, fevers, mouth ulcers and fatigue? It's the *combination* of these problems, plus family history, that seems to suggest some underlying problem.

Maybe it would help to point out that although you might not quite meet the criteria for SLE (Lupus), you are concerned that you might well have another auto-immune disorder - Sjogren's, or some form of mixed connective tissue disease? A specialist referral would reassure you about this...

Let us know how you get on, anyway x

[Hidden]

Hi!- funny how the exclamation point pops up but I am no where near happy at the moment xD.

I found this website after several bouts of desperation and this is my first time actually creating an account and actually typing something to someone. What I have learned since my Lupus diagnosis in January 2015, is that there are a lot of dumb doctors out there that only care about money. I started showing symptoms January 2014 such as hair loss but was not diagnosed until a year later. By then I had already developed Sjogren's and had a headache for a month, fatigue and muscle tension and aches in my neck, back and spine and the malar rash across my face. My teeth also became sensitive to cold temperatures. Raynaud's also developed on my fingers and I had trouble typing, getting out of bed and driving to work. Symptoms started at age 22 and now I am 24. Since my diagnosis, I've had multiple fevers, headaches and other aches, that have made me hate life. November 2015 my body finally reached its limit and I was hospitalized and almost became paralyzed because the Lupus started to attack my brain and spine in the form of Central Nervous System Lupus. Since then I have had 6 sessions of Cytoxan chemotherapy and 4 sessions of Rituxan and there are more sessions to come. Due to the chemotherapy I have lost quite a bit of hair, my hair has not grown for a year practically and the prednisone has made my face go round. My advice to you is to get an ANA test, it is just to see if you have any autoimmune activity in your body. From there, I went to my GP who referred me to a rheumatologist. You can hate me for this, ESPECIALLY if I am wrong but those do sound like my Lupus symptoms. I am definitely not a doctor, but please start with the Antinuclear antibody test or ANA test. I was able to sucker this test out from my retarded dermatologist that diagnosed me with Rosacea... she was dumb. It does not hurt to request a blood test from a dumb doctor, keep asking. A dumb or smart one should oblige! LOL

Most likely they will put you on Plaquenil and prednisone at first like they did me or a different regiment might be more applicable.

Best of luck, we all need it. I think I consider myself practically depressed at this point. I never was before.

I hate Lupus, it's EATING ME!!! But at least I acknowledge that I have it now, I was in pure denial before... wink face??? tongue face is better LOL.

[Wendy39]

Sorry to read your post beautifulinside. But glad you have found us here. This site has been a complete life line for me since my diagnosis in 2013. With hindsight I've had lupus for longer than that though - going back to 2008. The average lupus diagnosis takes 7 years. It's terrible isn't it!?!? Reading your post and your replies, I would say you should change surgeries. You need to find someone who is going to listen to you and someone who understands autoimmune diseases. I know you probably don't feel up to a "battle" like this right now or have the energy needed to deal with it all but I think it's your best hope. Stay in touch and keep fighting.