Lupus and Fibromyalgia

My GP is now saying that all my tiredness and fatigue is due to Fibromyalgia which I also have, this has started when I wanted to change my Lupus specialist who hardly ever saw me to one I have seen who really helped me and gave me the update I wanted, this specialist only gives me the update when I pay for a private meeting. I can't afford to do this anymore as I lost my job through being very ill and my hospital admittances etc.

My question is: does anyone else have both conditions, do you as do have itchy skin and does your GP say it is the Fibro which causes the tiredness?

28 Replies

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  • Yes I have both mine is subcutaneous lupus so my skin itches day in day out all day IF I do don't take 8 antihistamines a day they also control my flu symptoms and my swelling tongue, and I can still take them with plaquinil and methotrexate, do wot I do if u can afford 20 pounds this book.is my bible I take it with me to my gps the lupus encyclopedia 2014 issue by Donald e Thomas hope I've helpedx

  • Thank you for that link. It's a really useful tool and the links to Molly's Fund articles excellent.

  • Thanks for the response, I feel like my GP has abandoned me, she is annoyed that I look in books or on the Internet and even put me in my place when I said I had had a response from St Thomas regarding itching in linked to Lupus, she said I was wrong and not to look elsewhere. She didn't even believe me when I said my Lupus group local to me had itching so I have nothing for it and she said she can't do anything for me. So I don't sleep, managing on around 3 hours before I wake up to my skin problems. Now I see I have to increase my doseage.

  • Hi I have both to, i am very lucky i have fantastic gp who tries very hard to take care of me i have terrible itchy skin and i take medication for it all the time now.But the only thing i have found once labeled lupus everything becomes oh its the Lupus!!!!!

  • Hi, yes I think it is the Lupus. Now my GP says it is all Fibromyalgia. She is protecting the Lupus specialist who was rude to me and then said don't come back for 6 months when I told her not to treat me like that in front of a nurse and my daughter. This specialist is supposed to be the one I always see but seems to have passed me to others most of the time. The previous one who really helped me has agreed to be my named Lupus specialist and he is seeing me within 3 months as per normal as I have been so ill. What medication do you take for the itchy skin?

  • i take ceritazine 10mg daily it does help,

  • Hi there , yes I have both & the fibro causes unvelievable fatigue. If it was the lupus they could probably know by your blood results. The both really causes so many problems. Even with the itchy skin. I get so much hurting all through my body which can also be caused by both. A difficult question really. Chin up you are not alone in it all. Keep us updated on how you are . Take care.

  • Hi, they know it is Lupus from my blood results but I think my GP is trying to protect the Lupus specialist who would not even listen to me having itchy skin, she said it was nothing to do with Lupus and to take it up with my GP!

  • I have both...fibro diagnosis came first.....just seems to be a double whammy on the fatigue...I have very dry skin and acne rosacea ....no one is all that interested...I avoid GP as much as possible as find no real support there and see consultant roughly every 9 months....she listens and generally takes onboard issues..but in general I just lump it.....

  • Hi, that is just awful! I see specialists every 3 months as I keep being seriously ill and have had emergency stays in hospital. I don't find the old consultant useful and now my GP too. I am hoping that the new consultant that I have seen before will help. He was marvellous and noticed that I had very high sugar levels. In spite of the 3 month test showing that I had diabetes my GP had me take other tests which can fluctuate and pronounces me fit. Don't get me wrong, I don't want to be more ill but when it runs in my family and could be the reason behind my eyesight problems (I see a consultant every 3 months for this too) and my feet, it is a worry!

  • Hi lona I did write a message back but it just says hi lona sorry I see you've had some replys and they all say more or less same as I wrote hope you get sorted soon

  • Thanks

  • For the itching I use Aqueous Cream to shower/bath with. Cut out all soaps, body sprays etc and all shower gels and wash with the cream. You may find a difference just by doing that.

    Also you need a moisturiser from your doctor, I find Betnovate Cream which is a steroid cream and I use Balneum Cream also from the doctor. I use these twice a day and once you get in a routine it will cut down the itchy flares.

    You will still get them but it will reduce them.

    I hope this helps.

    Xxxx

  • Thanks for the update. I only have baths as just the water from the shower makes my skin itch and has done for years. I only use oils in the bath and special cleansers. I've been given Aveena by my GP but it does nothing for the skin. I did use Betnovate some years ago. I don't know why I have such problems as I rarely go out and so don't even use deodorant usually, luckily I hardly sweat though!

  • Hi lona467 yes I also have lupus and fibroblasts and always tired alwaY's a asking and itchy all the time I just try to relax as much as I can I also have bulging disc and trapped nerve in back and had a hysterectomy 5 was ago so still taking easy xx

  • It is not easy is it! I look dreadful from the lack of sleep, big deep grey rings under my eyes. I would just like something to knock me out!

  • Hi Iona,

    Try to avoid nickel as much as possible - this can be found in food as well as jewellery.

  • Yes, that is true, I have to be careful as I get terrible skin rashes too so can only wear some jewellery.

  • Hi Leona 467.. Hi hunny..that's what they said too me I've fribo.?dizzy and tired all time...well now being told .lot worse like I said...my fingers are swollen...my lips getting more blue...skin...going werriod Couler... Blue.white.spots all over tops legs.which I've had side 15... I thought was norm.....red face..well its not...p.s I was very.very I'll back in April. For 5/6 week.sweating..cold..hot..crawling up my back..now well think my simptons are showing up something????? I've osteoarthritis?? But rest no clue yet. Xx

  • Hi Louise, that's terrible!. I just feel like a zombie now as too tired. My fingers and feet swell but the GP said this is Lupus. I have lots of face rashes which make my face red and sore and have huge mouth ulcers which make my mouth look like I've had some work done!

    I keep getting hot and cold too. It worries me as I had bad kidneys last year with fevers and had to be rushed into hospital twice. It seems only the outcome is treated and my GP does not want to find out why this is happening.

  • Hi Iona,

    Thank you for your reply.

    However, be careful with nickel in food which can affect you just as much as jewellery. You can find out more if you google it.

  • Hi,

    I've been diagnosed with FM, also CFS/ME, though the specialist said symptoms over & above. Re testing Ana, and requested referral to Lupus specialist clinic for full investigation.

    X

  • Hi, I am seeing a Lupus specialist every 3 months but have asked to change the specialist I'm assigned too as getting mixed messages from her and the other two I see also.

  • evening,

    I have both lupus and fibro. my chronic fatigue, pain is caused by both SLE and FM , the itchy skin by SLE . its all a bit confusing as symptoms of each condition overlap so I am not always sure which is to blame. my specialist isn't much help really, ive learnt a lot from the wonderful people on here and fibro site too .

    hugs x

  • I'm learned a lot from this site too, not sure why my GP is so aggressive when I mention these sites and others having my problems, she said I'm not allowed to 'self diagnose'!

  • Yes i have been itching for over 8-9 year and a few people i know itch too who have lupus drive me mad too, but mine is daily and at night it worst it like you are want to tear your skin off and i have both systemic. lupus and fibromyalgia, the doctor gave me some anti depressant and and histormeans tablets sorry about my spelling and it work for a few months but it is slowly coming back. But the way he told me that the brain is basely bein to active and he need to put it back to a level and to help the pain for me i take cod live oil high dose and vit b's complete high dose slow releasing and it helps with my tiredness a bit and wear copper bracelet for the pain works a bit

  • Hi Colin, I have the same, it is terrible and also given anti depressants, nothings works, now taking Omega 3,6,9 which has helped as bit regarding the tiredness.

  • Hi lona, yes taking that as well the vits b's high doses are the one take a little while to get inthe body but it may work for the tidiness but slow release from H&B u may need a higher dose of anti depressant i'm going to try that asking my doctor if that may work it driving me mad too

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