Undiagnosed Newbie!!

Hi all! I haven't been diagnosed with Lupus but on many occassions it has been mentioned as a possibility but back in 2002 i did not have enough Lupus symptoms to warrant further investigation and was therefore diagnosed with CFS My Story.....

Age 13 began my periods and due to severity of pain and loss I was put on the mini pill. I suffered badly with migraines and severe growing pains in my legs in my childhood. Sometime between there and age 15 I have been told that I possibly suffered Glandular fever and unaware was never treated. I had chicken pox (confirmed by doctors) 4 times in my childhood and teens and twice in the last 15 years (confirmed by doctors as chicken pox not shingles). After the birth of my 1st daughter in 1996 I was diagnosed with M.E with severe muscle weakness, pain and fatigue. I've had a red rash on the palms of my hands since age 15 with no explanation. Approx in 2000/01 after taking my daughter to test her for blood for disorders as she bruised easily as I do myself they tested me too. My daugher was fine but I was told that my clotting factor was 55% and I was border line Heamophylliac but did not need to be treated for it due to my hemoglobin levels (??? i still am unsure as to what that all meant) Between 1996 and 2001 I suffered 6 miscarriages between 6 to 10 weeks gestation all unexplained (It was theory'd that I couldn't carry boys) told to take low dose asprin to help. I fell for my 2nd daughter easily while taking aspirin. I suffered PDD and carpal tunnel syndrome and LOST 2 stone while pregnant with her although she was born 7lb healthy in 2002.

2005 after prolonged fatigue, depression, migraines, muscle weakness and pain, I was referred to a chiropractor for my back and neck pain, headaches and to a CFS specialist. I was then diagnosed after 6 months of investigation with CFS in 2005. I went to a pacing clinic and dietition for how to handle my CFS without medication i was put on anti depressants.

I suffered another 3 miscarriages 8 to 10 weeks again unexplained. I went on to have a healthy baby boy in 2007. In 2008 i suffered a 7 week miscarriage and then a 8 week ruptured ectopic with it's twin. I lost 2 1/2 pints of blood and suffered anemia. I went on again to have a healthy boy in 2010 with an uncomplecated pregnancy.

My health has become worse over few recent years. Since my ectopic I developed a bumpy red flushed rash across my cheeks and nose. I went to my doctor and she told me it was hormones and it would go away on its own. It didn't and after many visits and 2 years i saw another doctor ( a visiting doctor to the surgery) who diagnosed me with Rosacea and gave me some gel to apply to my cheeks and nose for 6 weeks day and night. Although the gel took the swelling down slightly after 6 weeks it didn't do much else. I am on my 3rd tube and apply day and night with little effect although the doctor keeps prescribing it and has put me on the pill to help regulate my hormones.

Last year i suffered a 4 day nosebleed. Sounds extreme well it was. I went to A&E twice and kept being sent home and told to take it easy, rest and it would stop on its own as there was no sign of any ruptured blood vessels or damage that would be the cause.No tests were done and my doctor said that it was just one of those occurrances and nothing to worry about.

I suffer from headaches all the time and severe migraines that incapacitate me. Muscle weakness and fatigue. heavynes and aching in my arms and legs. Pain in my lower back shoulders and neck. pins and needle type sensation in my legs (i calll it restless legs at night) I can feel exhausted but have insomnia. For the last 6 months I constantly feel like I have flu/cold like symptoms. The red rash on my palms has spread to the tips of my fingers and around the area of my nails. I am getting pain in my wrists and tingle numbness in my last 3 digits on both my hands. I was diagnosed with irritable bowel syndrome 4 years ago but again I am not given any medication or any support as to how to help the symptoms. The pain in my wrists knuckles and especially my knees feels like a crunching grinding when I walk.

I eat healthily, do not drink. I smoke 15 a day ( always trying to give up) I don't take painkillers or anti inflammatorys unless I really have to. I have tried taking suggested supplements and vitamins but it doesn't help. I avoid sunlight as even in the british weather i burn terribly.

In recent months I have developed a red rash on my upper chest that looks like I've been rubbing it (irritation). I also have developed small thread veins in my legs over the last 5 years and have had 2 what I'm told are 'purpura' spots on my breasts. I have begun to suffer severe reactions to insect bites...a small knat bite causes a huge painful lump red itchy and burning..the last time i was bitten 3 times on my thigh and the lump grew as big as a golf ball in circumference.

I'm just turning 36 this month and i'm tired of feeling ill and tired. I'm tired of being told I have CFS and I'll get over it. I'm a single mum of 4 children and I just want to feel normal and feel that I can do what most 36 year olds should be doing. I'm tired of feeling like I'm hitting my head against a brick wall.

I'm not saying that I have Lupus...all these things could be separate issues!

If anyone out there has any suggestions or advice I'd really appreciate someone elses point of view that doesn't know me from Adam!

9 Replies

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  • hello there drogiangirl,

    sorry to hear of your troubles, some of the syptoms suggest lupus, all the miscarriages suggest the your body is fighting itself and unfortunately an unborn baby is seen as a foreign body therefore the body attacks it. i have very red palms and the bottoms of my feet, i also have the butterfly rash across the cheeks and nose,and chest and the top of my back, which can give you a burning sensention, if you have this rash ask for a biopse, which should tell if you have lupus also not every lupus sufferer will have a ANA postive blood test. and to be honest not everyone will have the same syptoms, some people can feel very fluie,spinked temperatures at the drop of a hat also the sun can cause alot of problems with the skin try wearing a high factor sun block gream all year round come rain or shine.you are definately not alone with your suffering and glad to chat any time hope i have been of some help

    angie xx

    ,

  • Have you had a referral to a rheumatologist before?

  • No I haven't. I'm in the process of changing my GP currently as myself and my children are having problems with the surgery with discrimination. Once I have I'm going to ask to be referred to a dermatologist (as the doctor diagnosed rosacea without having it confirmed) and a rheumatologist and see what happens. Thanks for the tip X

  • Best of luck with the new GP. Hopefully a referral will get you some answers. If you need anything and we're able to help, let us know.

  • Hello my names emily and iv been told have lupus I got told last August I suffered with EVERYTHING that you have wrote down its defantly sounds the same as my symptoms had I had before they finally told me I had lupus! I feel for you so much I have two little ones and I no how hard it is trying to look after them when your feeling so bad! The final straw for me was a lump in my right arm pit, it was like a golf ball! They did more bloods and it came bk that I has lupus its taken me 3 years to finally been told that I'm not going mad and something is wrong with me!! I would push and push your doctor to test you for lupus!! Hope this helps!? Good luck!

  • Thanks XX Bless ya...I'm hoping that a new doctor will help...I've contacted 4 surgeries so far and it's all down to catchment area and space so it's a struggle but I'm not giving up! XXX

  • Hi,

    I've suffered pretty much the same as you being told I had rosacea, early miscarriages etc was even told my joint and back pain was due to having big boobs, was given diet tablets told to loose 3 stone then go back and have a boob job on the nhs!!! This was all whilst living in cardiff and for well over 10 years of having the symptoms, not once was a blood test carried out. I moved to pembrokeshire a new doctor suspected lupus just about immediately, was referred to the rheumatologist where it was confirmed. Have had excellent treatment here. Don't give up and demand that they do the blood tests for lupus as well as for hughes syndrome as headaches and miscarriage are symptoms of this. Remember you are legally entitled to a second opinion, I wouldn't bother with going the dermatologist route but ask to be referred to a rheumatoogist for their opinion. Be strong and be determined not to get your symptoms ignored. Write a list of everything and take it to the doctors with you and tell him/her what you would like done. Good luck x x

  • my daughter is the same shes recently been diagnosed with von willibrands disease and they kept telling us they were finding clots in her blood and after investigation they discovered she was testing positive for lupus which explains alot of things. she sees a rheumatologist and hes started her on a coarse of antimalaria which can take a while to work so the pain shes suffering in her joints arent easing much. they dont give you much information, i still feel as if i dont know whats going on and it can be very frustrating and worrying when its your child

  • Bless u. Lupus is a bugger 2 diagnose as there isn't a definitive test that says 'Yes, u have lupus'. Always remember, lupus is a master of disguise & copying other conditions ;0)

    I was diagnosed at 16 & hindsight is a wonderful thing, as going thru all my medical history with the Rheumy that diagnosed me lead him 2 the conclusion that I basically had a dodgy gene & had been a 'lupoid' since birth.

    Even after living with the knowledge of my lupus 4 nearly 19 years, I still, even now, get new wonderful symptoms that yup, lupus or 1 of it's bedfellows is causing.

    U've had a rough time of it my lovely, but unfortunately, even the most genned up specialist 'can't c the woods 4 the trees' :0/ Wishing u loadsa luck ;0)

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