Unsure if have lupus

Hi, I'd be grateful for any advise as I'm feeling really stuck. I saw gp back in sept as had been suffering bad fatigue, migraine type headaches aggravated by light, muscle aches and feeling really down, this had been ongoing for 2-3 months after bad chest infection and I was also pregnant at the time. She did blood tests which came back with ANA positive 160 and was referred me to rheumatologist who did more tests. and mentioned lupus as a possibility but thought unlikely as didn't have joint pain. Tests came back as ANA normal but anti RO was borderline. She sent me for fetal heart scan to rule out any issue with baby and made appointment for me to return and repeat tests later in Jan when my baby will be 2 months old. I was hoping everything would resolve once I'd had baby but I'm still really struggling, I've just got over another chest infection and still have bad fatigue, aching a lot and is really getting me down. After reading up on lupus I think I may also have butterfly rash on my face but I'm not too sure as its not too noticeable and I've always just thought was my complexion. Wondered if anyone can advise what my blood test results may mean and if they may point to lupus or anything else, I'm really feeling desperate now to get better and struggling looking after a 2 year old and a newborn. Sorry that was quite long, thanks for reading if you've got this far!

12 Replies

oldestnewest
  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    This must be very traumatic for you and I understand you need to find out what the problem may be. Lupus is difficult to diagnose and there is no single blood test. SLE is also called the "disease of 1000 faces" because lupus can mimic every disease!

    The ANA test is also problematic. Apart from there being different "types", this in itself is also not conclusive; indeed, some lupus patients are sero-negative. The anti-RO is more indicative of Sjogren's Syndrome. These blood tests need to be taken regularly because blood tests can and do change.

    I do not know where you live, but I would suggest your GP refers you to see Dr David D'Cruz who is the Director at St Thomas' Hospital Lupus Clinic in London. They are the very best to find out whether you have any autoimmune problems.

    If you have health insurance, then I would recommend seeing Professor Graham RV Hughes, who is at the London Bridge Hospital, London. Prof. Hughes heads the Lupus Clinic and has taught most, if not all, lupus specialists, including Dr D'Cruz!

    I have a couple of question: Did you have any symptoms during pregnancy? What happened following the birth of your babies?

    We also 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.

    With good wishes,

    Ros

  • Hi Ros, thanks so much for your reply and the info. I do live in london but I'm not sure where I stand with being referred to st thomas as I've already seen rheumatologist at kings college hosp and am due to go back later in jan. In answer to your questions, my symptoms started mid way through my pregnancy after having a bad chest infection. After my daughter was born 6 weeks ago I then developed an infection of my perineal stitches followed by a chest infection. Thanks for link to group, will have a look.

  • I do know one consultant rheumatologist who was a senior registrar at St Thomas' several years ago and was appointed consultant at King's. If he is the same person, I am would have confidence in him as he was under Dr Hughes at that time. In fact it was he would told me that he wanted some experience in lupus as he had not had any real experience in lupus.

    If you feel you can talk to him (and I hope this is the same doctor) you can discuss your concerns about lupus and hear what he has to say. As far as I know, you are entitled to go to a specialist centre, which is the case at St Thomas'.

    I do understand your wanting to know what the problem is and that it may be lupus, but try not to read the internet! This is because there are websites which are filled with doom and gloom and inaccurate. Over the last 30 years, both diagnosis and treatment has dramatically improved. Today, the majority of patients live a normal life, have children and many come off all medication.

    If you need to talk, please join the LMB above or you can always email me privately here: roz [at] [lupus-support] [dot] [org] [dot] [uk]

    I wish you and your family a happy and healthy 2015.

    With good wishes,

    Ros

  • Mrs T,

    Hello! Something you may want to consider is to look for someone who does kinesiology and perhaps an integrative allergy center. These practitioners can test for any abnormalities and weaknesses in your organs and also any emotional components that can directly affect our immune system. The body will always let us know what is wrong and doing muscle testing and the kinesiology will dig a little deeper. I have used chiropractors who are trained in kinesiology and am currently working with an Integrative Allergy center. My auto immune issue was brought on by a spider bite in June 2014. So, I feel my symptoms were triggered by the invasion of the venom. Therefore, I am working with alternative treatments in addition to the allopathic to reverse the condition. Also, you may want to try an anti-inflammatory diet for awhile...plant based and gluten free. This has helped me tremendously. Cut out all sugars, processed foods, red meats, white/red potatoes, tomatoes, onion, spices....anything that can aggravate the body's system. This will activate symptoms. Also, talk to your doctor about adding B-complex and DHEA to your diet. Do some research on strengthening the immune system and arm yourself with information to discuss with your doctor. Try not to complain too much as doctors can think we are hypochondriacs, just be calm and educated in what you are experiences with the intent to get results not just bandaid what is happening. Document daily for awhile what is happening and if you change your diet, notice when you start feeling better. This could take a week or two. Also, juicing is very beneficial. Hope this helps.... Last thing....as hard as it may be to think positively, this is key to healing and getting healthy again. I once had Fibromyalgia (7 years) and when I finally decided I did not want to live the way it was controlling my life, things changed. I stopped saying I have Fibromyalgia along with using alternative therapies. Three months later all my symptoms disappeared and it has never come back. That was 10 years ago. So, don't make yourself believe you "have" something, instead affirm you are healthy and take steps to align your desires with your beliefs. I do say I have Lupus, I just say things are symptomatic and I am working from all directions to get back to optimal health. Hope this helps....Eileen

  • Thanks for your reply eileen. I have already cleaned up my diet, I avoid processed food and gluten, which has helped but only to a certain extent. I have found certain supplements helpful too but I'm breastfeeding at the moment so sticking to my postnatal multi, fish oil, b12 and probiotics. I've also been trying to learn as much as I can about things that can help boost the immune system naturally though

    again has only helped to a certain extent. I am also a great believer in the power of positive thinking and every day try to focus on feeling better, but after so long without improvement it does become increasingly harder to stay optimistic. That's great you managed to get better, but I don't agree that the power of positive thinking can cure things in all cases. Best wishes, Beth

  • Mrs T,

    You are welcome! Seems you are doing all the right things. So, if your symptoms are not improving then perhaps do some research on what others have done that has helped them that may be different than what you are currently trying. I have found that if what I am doing is not making progress then I try to find something new or change some things in order to get a different result.

    Regarding positive thinking.....I understand it as the following way: beliefs and desires must match in order for our desires to be as we so wish. Therefore, I am always checking my beliefs/thinking and also making sure I am not holding other's beliefs somewhere within me. We can absorb someone else's thinking and take it on as our own without realizing it. So, perhaps consider others around you and how they are reacting to your condition and what they are saying and thinking. It is a struggle to stay positive if others and our own thinking tends to lean towards what we don't want or people don't understand and we feel all alone. I practice mindfulness daily and work to shift any negative thoughts or attachment to the symptoms to seeing myself healthy again. I agree, positive thinking cannot be the cure all, but for me it is a part of the protocol I use for my own healing. With it I find it easier to cope and gives me hope for the results I intend.

    Wishing you the best and that you find the answers you are looking for.

    Blessings,

    Eileen

  • Eileen - mindfulness, yoga, Tai-Chi, biofeedback are all helpful in their own way. Each person has to find what works for them - what helps them. Counselling/Psychotherapy is also helpful since when we are ill, we can feel vulnerable and this can evoke painful memories from the past-in-the-present.

    I think you are rightly stressing the importance of a holistic approach towards the person - not just attention to the bit that is ill or "dis-eased".

    With good wishes,

    Ros

  • Ros,

    I agree with you that each person has to find what works for them and any type of counseling/psychotherapy/life coaching is a plus!!

    In my own experience the holistic approach helps the healing faster and gets to the root...which is often an emotional component, some of which we are not consciously aware of. Many times when we are in pain and frustrated, we can be resistant to change or looking at the possibilities of other treatments. Being dis-eased is no walk in the park and can take a huge toll on the emotional, mental and physical parts of us. But I know through the will and determination and pushing through the tough times, getting back to full health is possible.

    Appreciate your thoughts...

    Eileen

  • I agree! Even if we don't like to admit it, there is a strong connection between body and mind. There is no "shame" in needing to talk but unfortunately we live in a society that can feel "judgemental" and that needing help/support is a sign of failure. On the contrary, being able to admit our understandable and "normal" needs is healthy.

    I hope that when people come here they will read your thoughts Eileen. It is my experience that even (or especially) people who cannot post or talk, can benefit from reading other people.

    Thank you.

    With good wishes,

    Ros

  • As a general rule, it is important not to take anything without discussion with one's medical doctor. This includes "diets" or the taking of "natural" products on the basis they cannot do any harm, which is not the case. For example, DHEA is a hormone made by the adrenal glands and in the brain. There has been some suggestion that this "may" be helpful for menopause, based on a few studies.

    I agree that it is helpful to keep a journal and note one's symptoms - which might be aggravated by foods or spices. People with lupus have reported suffering from a wide variety of allergies, including allergies to sulfa-based medication.

    It sounds as if you felt you were being perceived as a "hypochondriac" - unfortunately, many women with lupus have reported similar experiences. The very people who ought to be trying to help are making the situation worse. It becomes more difficult to talk about new symptoms - and these new symptoms commonly develop over time - weeks and months. Therefore, if we cannot trust the doctor to be empathic, it means the symptoms and disease may not be diagnosed or treated. Since SLE is difficult to diagnose (unless the having the classic symptoms of positive ANA, lupus nephritis and a malar rash), watching and waiting before giving a final diagnosis is common. For example, I was seeing a well known lupus specialist who took 18 months before giving his diagnosis. To be given a wrong diagnosis can feel traumatic and a loss of confidence in the doctor. This does not mean not receiving treatment for the condition, whatever it may be.

    It is better to have "a positive attitude", but anxiety and depression are common. They can be the result of inflammation, but also a normal, "natural" response to a traumatic situation. I would always recommend psychotherapy should these symptoms feel unmanageable. There is no reason to struggle with these feelings alone.

    Be well!

    Ros

  • Be careful about boosting your immune system. I believe even natural things that boost it can boost it to do more damage. I would talk to your doctor first.

    I have been lucky with good doctors and when I complain about something new I usually get a new specialist. I live in the US. After I was diagnosed I started getting new issues and needed a neurologist, pulmonologist and of course my Rheumatologist. My doctors have taken the disease seriously and actually get on me about being med compliant because in the past I have convinced myself I don't need all the meds and have gotten myself into trouble and very sick. Now I follow their advice but expect them to explain why I need each med and what it does.

  • Thank you for such good advice. I hope you are as well as you can be and wish you a happy and healthy 2015.

    With good wishes,

    Ros

You may also like...