Can it be lupus?

[sazzbe]

For years now I have suffered from so many random things such as joint pain and fatigue so I was diagnosed with fibromyalgia 6 years ago. For years I have also suffered from my skin on my scalp and forehead developing painful lumps and blisters if I’m in the sun for prolonged periods.

I mentioned the problems with the sun once in a gp appointment and at that point I had blistering on my chest however I was just told to use a higher factor suncream.

Lately I have had so much pain in my hands I could hardly do anything requiring me to use fine motor skills so I have started doing some research and so many of my health issues fall into the diagnostic symptoms of lupus. I suffer from fibro, auto immune thyroid disease, migraines, hay fever and extreme coldness in my hands and feet although no discolouration as in Raynauds although my daughter has this. I also have a constant rosy face so I have started taking photos of my face at different times to start building up some evidence. Is this a Malar rash? I did read the flat redness that I suffer from could be this?

[Spanielmadlady]

Hi sorry to hear you are suffering you will get lots of support and advice on here.i have lupus.my advice to you is to write everything down and I mean every symptom, ache,pain,and sensation even if you dont think its relevent then go to your gp with it tucked under your arm.ask for full bloods inc DS-DNA, ANA and immunology.urine test as well.of they say no ask for a referral to rheumatology.dont be fobbed off they are good at that.good luck it's a long long journey to diagnosis with no quick fixes xx

[sazzbe in reply to Spanielmadlady]

I will do and thank you 😊

[Spanielmadlady in reply to sazzbe]

It took 5 yrs for me to get a diagnosis of lupus and it was picked up by a routine urine labstick which was off the scale.i was sent to a renal unit and a biopsy diagnosed lupus nephritis which is why I suggested urine test.they may tell you your bloods are ok but you can still have lupus and have normal bloods that's why I say dont be fobbed off.a rheumatologist will do more indepth bloods and hopefully look at you as a whole by that I mean bloods and symptoms not just numbers on a screen from the path lab xx

[sazzbe in reply to Spanielmadlady]

Thank you, I will definitely keep a diary of everything. Having fibro unfortunately means every ache or pain I have gets blamed on that, send me to physio and say it’s fibro seems to be the go to solutions in my experience 😡

[Spanielmadlady in reply to sazzbe]

You need someone to look beyond that which hopefully a good rheumatologist will.i have no experience of fibromyalgia but with lupus pain can flit around the body ie right elbow then left hip or be symmetrical ie both elbows and last for a few hours to days so it's all worth noting if its different from the fibromyalgia.irrated skin,mouth or nose sores anything with the eyes,brain fog,fatigue,sleep patterns etc things you might not think relevent.also by writing it down it's easier to repeat if you end up seeing different people x

[sazzbe in reply to Spanielmadlady]

Yeah that’s just the problem it’s exactly the same with fibromyalgia unfortunately. I read people can often be misdiagnosed with fibro when it’s actual lupus because of this.

[Spanielmadlady in reply to sazzbe]

I get the impression it something that also goes hand in hand with lupus.people with lupus tend to have other auto Immune illnesses (I have 3 others )which makes everything more complex x

[Josiah150767 in reply to sazzbe]

Hi I am the opposite. I have lupus and started getting other symptoms and gp kept giving me steroids which weren’t helping. I moved area and my new rheumatologist diagnosed fibromyalgia. So don’t give up and as suggested write all your symptoms down

[Alisbabas]

Hi,

I’m in the same boat as you sazzbe, I have been referred to a rheumatologist and just about to get all those blood test done as stated by spanielmadlady and a few more to check for other stuff.

I’ll keep you posted

Al

[sazzbe in reply to Alisbabas]

Fingers crossed you don’t have a long wait. It always seems such a long time from the point of referral to actually being seen!

[JoonPearl]

Hi there, this may be a shot in the dark. By any chance do you have breast implants?

[sazzbe in reply to JoonPearl]

No I don't

[MtnClimber in reply to JoonPearl]

Great question, there. Something to watch out for, definitely, with these types of complaints.

[JoonPearl]

Cool. I just wanted to check, just in case. This is why I asked: I have silicone breast implants and I have a lot of autoimmune symptoms (50-70) for several years but rheumatologist and breast specialist now believe I have Breast Implant Illness and not Sjögren’s, lupus, fibromyalgia, or RA. Silicone in the body can cause a foreign body and autoimmune response. I’m having a explant surgery to remove them. There are a lot of women with the same symptoms worldwide who experienced a 75% - 95% complete recovery rate after removal.

[sazzbe in reply to JoonPearl]

I’m so sorry to hear the impact the silicon has had on your body. I hope you feel better after your surgery.

[MtnClimber in reply to JoonPearl]

I've heard this so many times before. I know someone personally with a similar story as yours. Her recovery began immediately after removal. Photos of her before and after removal don't even look like the same person. She was so swollen and sick with those implants. I wish you a speedy recovery and great health in the future! Maybe you can make people aware of the danger.

[JoonPearl in reply to MtnClimber]

Hi there, I had my explant operation (implants and capsules) and they were removed on Thursday. It was a complete success! My recovery was like your friend’s, a lot of my symptoms were immediately gone. And, the brain fog I’ve had for years and years is gone, I feel so awake, switched on and present. A bit of a miracle. I still can’t believe it. Just thought I’d let you know. Xx

[MtnClimber in reply to JoonPearl]

So excellent to hear!! I'm sure your story will bring hope to many others! Thank you for sharing.

[sazzbe in reply to JoonPearl]

Fantastic news I’m so pleased for you!

[JoonPearl]

I just wish it hadn’t mimicked several different autoimmune diseases and MS so it could have been easier to diagnose. You live and learn I suppose

[bunch1974]

I also have a light red rash on my cheeks consistently and I have found it increases and burns at times, especially when I’m stressed or I overdo things physically. I also have fibromyalgia and Chronic Fatigue Syndrome.

Last summer after a lot of stress I was diagnosed with PMR - horrible shoulder and back and hip pain and not being able to get up from a chair or walk up stairs.

I finally was able to get an appointment with a rheumatologist 4 months later and after tests he diagnosed me with Undifferentiated Connective Tissue Disease....UCTD. I have symptoms of lupus, Sjögren’s and PMR along with the fibromyalgia and CFS. UCTD means that you have symptoms from more than one disease but not enough or all of the symptoms to diagnose it as any one of them completely.

I was started on Prednisone and Hydrochloriquine (sp ?) in December which has worked for the PMR and Sjögren’s, but still

have lots of pain and fatigue from fibromyalgia and CFS.

I hope you find answers and feel better soon 💕

[sazzbe]

I’m sorry to hear you have had such a hard time, it’s so frustrating not to actually fit the criteria fully to get answers!

Like you I have terrible back and hip pain, I can’t walk very far before I get pain in my pelvic area too which can be so bad I have to use crutches in my house and crawl upstairs. I am waiting on an mri if my lower spine. I was referred to neurology a few years ago for numbness and tingling down my arms to check for MS I had an mri of my upper spine which diagnosed a benign tumour so I have an open appointment with neurology thankfully.

I have forgotten what it’s like to have a pain free body even for a day!