How has your quality of life been affected as a result of lupus?

[lupus-support1]

What do you think would improve your quality of life?

[luppychick]

It's made my life difficult, because they say I don't look sick they think I am faking my illness.

I think people want to see me bleeding from every part of my body,writhing around in pain and screaming in agony before they belive that I am sick and that's just family.

Work is worse they dont belive I am sick when have time off sick or hospital they think am making it up. When am in a flare my husband and son are my carers as I cannot do much for myself. Looking at the future is dismal I know my life will always been like this and it scares me,I have put wheight because of the steroids, I have lost my hair due to my methotrexate injection, and I have lost most of my memory and I cannot cry due to sroygen wrong spelling and constant dry mouth.

So no cant see anything to improve the quality of life except lupus being an illness that people take serious.

Luppychick x

[Nobody1963 in reply to luppychick]

Wow sounds like the response I got from Fibromyalgia, and Now I was just Diagnosed with Lupus. This is all freaking me out. All the meds ?

[lupus-support1 Administrator in reply to Nobody1963]

I can understand how anxious you are feeling.

We have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

[lupus-support1 Administrator]

I take you very seriously. You are not alone in what you experience because you "don't look sick". This lack of compassion and understanding is cruel and unhelpful, making you feel even worse because you feel you have "to prove" you are ill. You can't even cry because of Sjogren's.

If you want to talk more privately, you can always register at lupus-support.org/LuPUSMB and send me a Private Message.

With good wishes,

Ros

[shakylove]

well I found out I had lupus after my first child in 2009 I was 16 young mum had lots of joint pains n feeling ill all time I had low in iron it took 9 months to find out wat was wrong lots test all time n one blood test came back I had lupus sumthing was positive in my blood anyways I was feeling reli tired all time had gd days n bad days then I had lots stress going n when I tried for a bby I got pregnant n kept losing bby they did more tests n after 4 bby I lost they found out it was my lupus n everytime I had miscarriage I experienced small flare ups til this one time I end up at hospital wiv my husband coz he was ill n then I was walking decided to sit down n I cudnt feel n move one side of my body my arms n legs reflexes had gone they did lots test but cudnt find out wat it was n doctors was arguing wiv each other on wat it was then after few weeks I got everything back then I found out iwas pregnant they put me on fragin injections n then had few small flare ups in pregnancy but then at 20 weeks pregnant this side thing happened agen n I bin put thro to neuologicalist to find out wats happening n I still cant walk this time n I am in pain wiv my back tht bad I sleeping on couch coz I cant lie down on my back I keep getting sharp shooting pains in my back n cant travel I am stuck at home I am crying n screaming a lot waiting for mri scan but they hav to put me out to hav it done n also fallen down stairs when I was pregnant wiv lupus headaches

[lupus-support1 Administrator]

Thank you for your response. I am so sorry to read your account and can appreciate how distressing this has been for you. Were you diagnosed with the antiphospholipid antibody (Hughes) syndrome which can cause miscarriages, headaches etc because the blood is "sticky" ie blood thinners such as Fragin thin the blood.

We are here to support you.

With good wishes,

Ros

[shakylove]

yea I was diagnosed wiv tht but do u think it cud b lupus thts doing this to me coz they didn't know if its lupus or spinal myelitis then my neugoloigst thinks its sumthing else but he don't know what it is but lots of other specialist hav sed they think it cud b lupus or spinal myelitis n I hav bin reading info about it recently

[lupus-support1 Administrator]

I cannot make any diagnosis but I do think you should be seeing a specialist in lupus ie a doctor who sees patients daily at a lupus clinic/hospital. I do not know where you live so I cannot make any suggestions. However, St Thomas' Hospital, London has a lupus clinic and Dr David D'Cruz is excellent. Privately, you could actually see Professor Graham RV Hughes, after whom the syndrome is named. He is at the London Lupus Centre at the LondonBridge Hospital, London. However, this is private not NHS like St Thomas. If you can afford it, given your description, I would see Professor Hughes.

You could talk more about this at the LuPUS Message Board where a number of people suffer from Hughes syndrome.

With good wishes,

Ros

[shakylove]

how much is it private to b seen in London or do u know any numbers or contacts to go see about it

[lupus-support1 Administrator]

Here is some information:

Website; londonlupuscentre.co.uk/

[phone]

The London Lupus Centre

1st Floor, St. Olaf House

London Bridge Hospital

27 Tooley Street, London SE1 2PR

Try and speak with Sandy Hampson who is Professor Hughes Personal Assistant.

If you get an appointment to see Professor Hughes please say hello to him from me. I am very confident that Prof Hughes will be able to diagnose you. Many patients have been disdiagnosed with MS when it is Hughes Syndrome. Miscarriages are a major syndrome and there IS treatment.

Be well!

Ros

[lupus-support1 Administrator]

Hughes Syndrome

Diagnosis is made via taking a clinical history with symptoms dating back from childhood eg migraines/headaches etc and miscarriages are common because insufficient oxygen is getting to the placenta which means the placenta dies and there is a tragic miscarriage..

Many have a red lace-like rash called levido reticularis. I wonder whether you have had 2 basic tests:

Anticardiolipin Antibodies (aCL)

Test

Sometimes referred to as Antiphospholipid

Positive in 80% of cases

Higher Levels = Higher risk of Thrombosis

Lupus Anticoagulant (LA) **

Test

Positive in 30-40% of cases

Cannot be used if patient is on warfarin

** The confusing term ‘Lupus anticoagulant’ should be done away with. It is NOT a test for Lupus and is NOT an anti coagulant. But it is a historical term, and so far has stuck. Confusion is added to by the variety of clotting tests used in different laboratories with abbreviations including KCT, KCCT, DRVVT and so on. A topic best left to the Haematologists.

Of these two tests, the first is far more important and more frequently positive - but because nature can be awkward, some patients have only one or other test positive - hence the need to test for both. Having said this, we do see some patients who appear to have Hughes Syndrome in whom both tests are negative.

It is usually advisable to repeat the blood tests on more than one occasion - especially if the results are 'borderline' or 'doubtful'. One positive test for antiphospholipid antibodies does not mean that a person has Hughes Syndrome. For this reason, the test should be repeated after 6-8 weeks. A positive test on two occasions is much more important for doctors making the diagnosis than a test that is only positive once.

[shakylove]

my doctors was thinkin its lupus myelitis do u know much about tht or is tht part of this hughes syndrome or is it completely different n do u know what treatment is for it

[lupus-support1 Administrator]

I am not a medical doctor and cannot give you any medical advise regarding diagnosis. I can tell you that many patients who have been diagnosed with Multiple Sclerosis which involves inflammation of the myelin sheath have Hughes Syndrome and not MS. The treatment and prognosis for Hughes Syndrome is very positive through blood thinners because patients have "sticky blood". Professor Graham Hughes is THE expert. If you get a referal to see Dr David D'Cruz at St Thomas' Hospital, he also works with Professor Hughes.

The anticardiolipiin antibody test (the aCL) is a very helpful test for Hughes and usually repeated in about 6 weeks. The other test is not as helpful and patients and doctors think it is a test for lupus which it is NOT.

What is "lupus myelitis"

First, this may occur WITH systemic lupus erythematosus (secondary antiphospholipid antibody (Hughes) syndrome OR it may occur alone (without SLE or lupus) in which case this is PRIMARY ANTIPHOSPHOLIPID (Hughes) SYNDROME. In both cases it is associated with the anticardiolipid antibody.

Hughes Syndrome has many clinical symptoms. The two symptoms you wrote about were:

Multiple sclerosis-like features

Some people with Hughes Syndrome develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. Consequently, one of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis, and the clinical team here are continually treating patients who had been previously misdiagnosed with “multiple sclerosis”.

Pregnancy problems

One miscarriage is a disaster. Two is worse. Imagine the suffering of women who have 3, 5, 7 or even 12 pregnancy losses, and sometimes as late as the last few weeks of their pregnancy.

We now know that Hughes Syndrome is the most common treatable cause of recurrent miscarriage: depending on which study you quote, the figure is up to 1 in 5. Furthermore, late pregnancy loss, fortunately an unusual problem in pregnancy, is very strongly associated with Hughes Syndrome as is pre-eclampsia, placental abruption and intra-uterine growth restriction.

For the sake of a simple blood test, patients with miscarriage or late pregnancy loss can be tested for Hughes Syndrome. Treatment of these patients has proved one of the true successes of modern medicine, the successful pregnancy rate rising from a previous low of fewer than 20% to figures now in the region of 75-80% success rate. Treatment is with low-dose aspirin and/or heparin.

hughes-syndrome.org/symptom...

My advice is please see Professor Hughes.

Be well!

Ros

[lupus-support1 Administrator]

If you want to talk to other people, you can go to: lupus-support.org/LuPUSMB

Registration is FREE and I can also be contacted there. There is a specific forum for Hughes Syndrome but you have to register as this is a private forum.

Ros

[shakylove]

i found out today after having all them symptoms tht i am lacking in vitamin b12 n tht cud b causing me all these problems but got to wait for results from specialist about mri scan tht i had done to make sure its not nothing else n tht they pick everything up but i do need now 6 injections then i am on injection every three months n they need to test me for pernicious anaemia to see if it tht too

[lupus-support1 Administrator]

Have they explained how Vitamin B12 deficiency explains miscarriages? I hope your problems are solved by these injections. However, according to what you said, doctors confirmed lupus and flaring after the birth is typical. Pernicious anaemia may be an additional factor.

People can be very cruel - you don't look sick so you are making it up! Many with lupus look "normal". In addition, people can get envious of someone who is ill as they seem to have the attention they need. However, they don't know how ill you can feel living with lupus.

I still would like you to see a lupus specialist to ensure you get the best possible treament you need.

With good wishes,

Ros

[shakylove]

yea they never reli explain it tht much about vitamin b12 deficiency they told me website to look up but now i hav some questions have i got vitamin b12 deficiency coz of lupus flare up n so is it lupus tht has flare up tht cause my problems n wud i still steriods coz this n will they see tht its flare up lupus on my mri scan n whats all treatment might i hav to help me recover from this what happen if injections dont work n i am seeing specialist on monday for my lupus n i am waiting for neulogisted dr hamdalla to get in touch about mri scan

[lupus-support1 Administrator]

If I have understood you, a doctor (I am not asking for a name but whether the doctor is a specialist in lupus) tells you to look up information on a website!!

In other words, the doctor did not sit down and explain to you what they think?

Yes - a neurologist will be able to diagnose the MRI scan of the brain - and this must feel very scary!

However, you still need someone like Professor Hughes to determine whether this is the antiphospholipid antibody (Hughes) syndrome.

The test you may have had is called the lupus anticoagulant which is very confusing for doctors and patients. This is because it is NOT a test for lupus, but a very sensitive clotting test ie to see whether your blood is "sticky". This means that the blood does not reach to all parts of your body and this can include the brain (causing headaches, neurological problems, depression and even MS symptoms) and other organs such as the womb which can mean that if there is not a good supply of oxygen, there can be a miscarriage.

The good news is that if the blood is "sticky" there IS treatment ie blood thinners.

Please see Professor Hughes (private at the London Bridge Hospital see a previous post) or Dr David D'Cruz at St Thomas Hospital, London on the NHS.

Please let me know how you get on.

Be well!

Ros

[shakylove]

only think is london is little to far to get there but i do see dr chattopadhyay he did work in london n i think i hav bin tested for tht anticoagulant coz when i had them miscarriages person at bolton hospital tht was trying to find out wat was causing the miscarriages tested for everything n it was them tht sed i found test saying its lupus tht caused the miscarriages thts why they put me on heparin injections n asprin while i was pregnant to stop the miscarriage from happening n it work but now i am not on anything but my specialist for lupus is under wigan hospital so i dont know if they spoken to age other about it or not

[shakylove]

a doctor didnt tell me wat they think coz it was at my doctors they wasnt my lupus specialist so i am seeing my lupus specialist on monday but my doctor did only say look at website but now i hav many questions

[lupus-support1 Administrator]

Thanks for the clarification.

If I have understood you, they are saying that it is the antiphospholipid antibody (Hughes) syndrome ie "sticky blood". This does NOT mean you have lupus - that's why the test confuses people!

If you are coming from Bolton, it is a long way. However, there is a system at St Thomas that patients can stay over night for free at a hotel nearby. There are Members at the LuPUS Message Board you can talk with about what is happening. Registration is free. Just sign up at lupus-support.org/LuPUSMB

I am also there.

Please let me know how you get on.

Be well!

Ros

[collette]

My quality of life has been affected dramaticly with regards to constant pain and not being able to lead a normal life. Just the little things in life like go for a meal with friends and family after a certain time during the day. This is because by 5pm I am absolutley exausted and in so much pain. Also not being able to make plans with anyone because of not knowing from one day to another if I well enough to join in. I am doing a full time Degree and was on a full time placement for 6 months which is the same as a fulltime job as well as undertaking academic work was very difficult, how I managed to complete it I do not know. Pure determination I'd say. Thank god I am just in Uni until the end of may then come September I have to do it all over again. My consultant want to take me of Hydro and start me on azathioprine which I know its sad but I can't wait because Hydro is not workng at all. I am currently on Hydro, Naproxen, Co codomol, Tramadol and corticosteroids. They have helped a little because at the beginin I felt like I was dyeing dramatic I know but thats the only way I can explain it.

[lupus-support1 Administrator]

Dear Collette,

Thank you for your message. What you describe is a common experience. You are not alone.

One of the difficulties we experience is to do with quality of live and psychological support which is almost non-existence. This is why LUpus Patients Understanding & Support (LUPUS) was forumed in 2000 where we provide free online psychological support and information. We have our own in-house counsellor/psychotherapist.

I would encourage you to open a free account @ lupus-support.org/LuPUSMB where you can talk with other people like you.

With good wishes,

Ros

[collette]

Thank you for our response and information Much appreciated Ros

[collette]

Hi I have ried to but its saying my date of birth is not the correct format, which format should I use

Kind Regards

[lupus-support1 Administrator]

Please use this: nn-nn-nnnn where n=number

Please note: use - and not /

Ros

[lupus-support1 Administrator]

Any problems - then email me: roz [at] lupus-support [org] [dot] [uk]

send your details and I will register you myself.

Ros

[collette]

Thank you very much it has now worked

Kind Regards

Collette

[collette]

Hi Ros sorry I am finding it difficult to master the other support group lol, I am not able to search members on there and I am unsure how I post anything. Your help would be greatly appreciated. Thank you

[lupus-support1 Administrator]

Dear Collete,

You cannot search "Members" because of the issue of confidentiality. In other words, this is to protect you and to keep your information confidential.

To post:

1. Sign in - and you will have access to ALL the forums, the majority of which are private. If you do not sign in, the forums are hidden from view. Again this is to protect our Members' privacy.

2. You can click on any post to read and you will be able to contribute by clicking on Reply to this topic.

3. If you have a question or want to post something new (a New Topic), all you need to do is to choose a forum. You can choose a forum by selecting the most appropriate one for your new topic. Don't worry too much because I can always move the topic later.

4.Select the forum by clicking on eg Emotional/Psychological and then click on Start a New Topic and then write your message and at the end Post New Topic. Don't forget to write the title.

That's all there is to it. The LuPUS MB conforms to how most external forums work. As I said, don't worry where to post - what's import is that you post and our members will respond to you. Please introduce yourself.

Be well!

Ros

[collette]

Thank you

[cctexan]

I'm a bit slower and I have yet to master the rest thing. I hurt when irest. When I a m volunteering or doing a little work I'm fine but its nothing like three years ago. But then, I've recently started planquenil and hope that will help

I suspect i been nin one long flare for a couple years. I maybe fighting cancer or some illness too and mynusband is a yeller. I'm finally grasping how stress works and how to walk out on it , him, negative friends, my mum etc.

[lupus-support1 Administrator]

Stress can affect us - it makes it more difficult to cope - but it also affects our immune system too.

Plaquenil (hydroxychloroquine) is a standard drug used to treat lupus. It is also good for rashes and fatigue.

Be well!

Ros