Help Needed Please?

Hi Everyone

I have just come across this website through google and wondered if anyone could help or give their opinion.

For the past 4 years I have been a very poorly person with no one able to pin point why certain things are happening.

I have periods of extreme tiredness, skin all over sore to touch as if flu but not flu joins ache and stiffen. I seem to get infection after infection ie abcesses both mouth and perianl and never respond to medication one episode was so bad I had emergency surgery and had to have glands removed from neck and drs gave me 24 hrs to live as airway had closed to the size of a straw thankfully Im still here.

Also sunlight I hate it cant go out when its a sunny day it makes me feel ill, I feel drained like the life has been sucked out of me and have to lay down I feel that ill, I also get a rash on my chest in a v shape within minutes of being outside red and blotches which scar. March this year I will cut the story short but I had 4 embolisms which can not be explained as I dont tick the typical box, Im waiting for genetic testing, but since the clots my right leg is 8 inches bigger than the left severe pain and swelling in the knee and calf. had a scan which confirms no DVT in leg and currently trying to find out what is causing the swelling. Constantly cold hands and feet shivers can never get warm, and Im at the end of my tether with being told Im just unlucky.

I have seen 2 dr's in the past week at our of hours who have asked me if I have Lupus or have I been screened my answer is no and they have said I should speak to GP re testing.

Just wondered from your experiences what your thoughts are and what the best way I should go about it.

Im 36 married with 3 children who I adore and life is pretty mierable as mummy is always ill and tired and want the old me back.Thanks for listening and reading, sorry for the long post too. x x

19 Replies

  • I am so sorry to hear how you are suffering. Lupus is one of those illnesses that is very hard to diagnose with 100% accuracy as it affects everyone in different ways at different times.

    Lupus has many symptoms that are often misdiagnosed on their own and it can take years to piece it all together. It sounds like you could have something autoimmune going on and warrant serious investigation.

    My suggestion would be to list all your symptoms and ailments no matter how insignificant they may seem and take it to you GP.

    Ask to be tested and referred to Rheumatology at you nearest hospital.

  • I forgot also sweats worse at night even though Im cold I am soaking wet its like I have done a full work out but not. x

  • I am sorry to hear about what you are going through. I used to get rashes and it made my skin peeled off , always scratching. The rheumatologist referred me to a dermatologist who did a biopsy and that was when i found out it is lupus . Ask your doctor to refer you to see a dermatologist. Good luck

  • Do ask your GP to do a test for lupus (SLE). Your symptoms seem very similar. In any case whatever the findings, you need referral to a specialist who understands autoimmune conditions like lupus. With the right care and treatment hopefully you can get sorted, good luck!

  • You should not say sorry you poor thing. I did not have such serious symptoms as you have but after years of pain and different things happening I have recently been diagnosed with Lupus and the Rheumatologist said something along the lines of because there were so many different things it was Connective Tissue Disease. Please do start to be more firm with your doctor and insist on seeing a Rheumatologist as a matter of urgency. I am no expert but it sounds as though a Rheumatologist is what you need. Be more forceful with your doctor. In general GPs do not seem to know much about such things and just let them go on for a long time. I was the same for years until I bought a digital camera and showed my doctor some pictures of me with the dark red rash across my face and she then did something. Before then I had said several times, 'Do you think I've got Lupus?' and she always just said, 'Oh you wouldn't want Lupus!' I think we do know our own bodies and should be listened to a lot more. I do hope that you will soon be feeling very much better.

  • Thank you for all your comments, my GP commented the other day it is like you do not have an immune system, as I had 2 perianal abcesses and a mouth abcess which ended up in surgery this was 2 weeks ago.

    My embolisms where scary as was mis diagnosed I collapsed and hubby called 999 on arrival they stabalised me and my bloods came back showing positive for a clot an hour later the nurse came with some anti biotics and said I was fit to go home I could hardly breathe was in pain and grey. My husband called hospital next day demanding a lung scan which was told 2 week wait he told them I would not be here in 2 weeks they agreed to scan me the following day in the meantime I was admitted again and they did the scan a consultant came to see me the same day and told me it was not an embolism in her experience she knows one when she sees one and all I had was bronchitis put me on steroids inhalers and see me in 3 mths, 15 days later I called the hospital as I was getting worse and demanding they look at my scan they agreed and told me they would contact me in a couple of days if anything was on there, 20 mins later I got a call from the same dr telling me to stay calm and get to hospital asap when I asked why she said I had had 4 embolisms and was lucky to be alive, when we arrived the 1st thing they said was why on earth have you left it 15 days for treatment this is life threatening, my response I have not left it 15 days if I had not called today when would you have contacted me. So we are having a nightmare as they have all closed the doors as we are taking action against them x

    I feel like Im going mad, last week my friend came to take me to hospital as I called her to say Im really poorly she is a nurse it was onlt yesterday she came to see me and said how much better I looked, but last week when she seen me all what was going through her mind was she looks like she is on her death bed and it frightened her, she has mentioned lupus a few times but its getting someone to listen x

  • Where do you live, Sugabuddha? It might be someone on the forum can recommend a good rheumy/auto-immune specialist in your area. I have found over the years that if I go to my GP armed with a name (doctor or clinic) it's easier to get a referral. It definitely sounds like you need a specialist. I think many of us have been the position where all we want is a diagnosis - doesn't matter how bad or scary: once you know *what* it is, you can start working out *how* to deal with it. And the most important thing: don't give up. I know it's easy to read, but you have three lovely children who need you, so keep fighting. I'll be thinking of you! xx

  • I'm sorry to hear your having such an ordeal, this is a brilliant place for support. I would definitely ask for autoimmune tests to be done but also a test for APS anti phospholipid syndrome (sticky blood) as this often goes hand in hand with Lupus. A lot of people on here can relate to what you are going through in the battle to find out what is going on, it's sooo hard when your suffering so badly and no one seems to know what to do with you. I would ask your Dr to test for all autoimmune illness and APS, thyroid etc and to get refered to a rheumatologist on the NHS. I was so ill waiting the incredibly long wait on the NHS that I also got my Dr to refer me privately - this is what got my treatment started with meds, I am now linked back into the NHS, I couldn't wait any longer as had no quality of life and also have 3 children. My experience is if they don't know what to do with you they patch you up and ship you out, put a plaster on and send you home. You need to believe in yourself and keep fighting you sound like you have a good husband who is fighting for you and a good friend also make sure you take someone with you to help with this weary battle, keep a diary of symptoms also. Keep us posted. I wish you the very best of luck, sending you well wishes. Jo xx

  • You are having a really bad time and i feel very sorry for you. Can you ask for a referral to a rheumatologist, because you sound as if you have anti phospholipid syndrome which causes thickening of the blood and therefore can cause clots. try to get past your GP. If you firmly but politely request a referral he has no reason to refuse, or you could enquire about prices for private care. Good luck

  • I live in Warrington Cheshire, and any info would be really appreciated.

    It has gone on for too long now, and need answers surely it cant be all down to be unlucky!

    We are looking at going private but again its knowing who the right person is to see as it is alot of money too lose if we see the wrong person.

    Thank you for all your input means alot, and Im glad I have found this forum as people around me are so frustrated with the system and seeing me so ill x

  • Hi sugabuddha. Hope you are feeling a little better today. I too had trouble getting a diagnosis but I was lucky enough to have a doctor that stuck with me until I got my SLE diagnosis. This still took almost 2yrs and in that time I thought I was going mad. I too have children and I feel very guilty that I haven't been able to do things with them that I should. I won't bore you with the details. As I don't live in your area I can't help with who to see. However, have you looked at there is lots of info and other people's experiences on there. There are also contact details. Tel nos, emails etc. As you are unsure who to go to in your area it may be useful to ring LupusUK. Hope you get help soon

  • I just had a quick look Thank you Tigger11 and there is an awareness day 21st October at warrington hospital so will pop along in the meantime I will see my GP this week. Im at the hospital tuesday to see orthapedics as I have 2 prolapsed discs just to add insult to injury lol x

  • Glad to be of help. You are in the wars. I had 4hrs at A&E on Friday. Went in with unbearable pain in left shoulder. Ended up being checked for a heart attack!!!! Heart OK (thank god). Sent me home without actually telling me what was wrong. Have felt I was hit by a bus all we!!!! Ah we'll back to GP on Monday. Take care and I hope you soon get the help you need xx

  • Hi Tigger - could be Pleurisy or Pericarditis or both as that's what I have and the same happened to me the other week. Worth mentioning.....

  • Thanks DonnyJM. Am also wondering if it could be linked to a change from Plaquinel to Quinoric which I've now been taking about a month!

  • Dr Bucknall at Salford Royal is a good rheumy/auto-immune specialist, thats where I go and i live in Leigh not far from you

  • Thanks Lupusgirl your not far at all. My hubby is the breakfast presenter on Wish FM which I think covers Leigh. x

    Hope your feeling ok now Tigger11 xx

  • Sorry i'm a radio 2 girl in a morning and I have forgotten his name thats another thing with Lupus your mind goes blank at odd moments. As the others say get your gp to do the blood tests, mine thought it was just the signs of old age, I was 39 when diagnosed he didn't expect that it would be Lupus and it was the Lupus that shut my kidneys down 7 yrs ago but it took a good few yrs for it to be diagnosed as the lupus that caused it.

  • Hi there, very sorry to hear how difficult things have been for you. Sounds very much like you need a referral to rheumatologist as symptoms seem to point in that direction. All advice I would give has already been given, write down symptoms, however small as they are equally relevant, as they happen. Lupus UK have a little Lupus diary in their shop, only costs 10p and is one of the best things I have ever purchased as it allows me to keep track of anything new and I then take it to GP or consultant when I go. Even if it turns out not to be Lupus, just having all the info in one place would be worth it. If you still meet a brick wall at your GP, I would make an appointment for a private consultation, your health is far more important that however much it costs, and that will get your care going in the right direction. I would also consider a change of GP. Undiagnosed Lupus is much more dangerous than diagnosed Lupus, fight to make your voice heard.

    Lupus is a difficult illness to diagnose at the best of times, it can take years, BUT under the care of a good consultant at least they will get you on meds to begin the process of trying to get it under control a little. Then you should see an improvement in your symptoms and start to feel a bit more like your old self. All the best..

    Sam x

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