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LUPUS UK
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Connective tissue disease/Lupus? Still no diagnosis

Hi, anyone who will listen and help me make sense of what is happening to me. Struggling! Here is my story so far..

Last year after other medical issues (have endometriosis diagnosed in 2008 and have had many laparoscopies including partial hysterectomy), starting to experience knee pain. Have had this on and off before but x-rays/blood tests have never showed any problems in the past. Anyway, last year about June time I noticed was particularly bad. I decided to go outside and sit in the garden and have my cuppa tea, was there for literally 10 minutes and noticed on both legs (one slightly worse than the other had come up with what I now know was like mottled skin kinda patches red ones all over my legs - my knees were particularly bad this day. I came inside immediately and was freaked out. This had never happened to me before in the sun. A few hours later I felt really unwell, like I had flu, I was really cold and achy all over. For about two weeks after that I had really bad night sweats - my sheets were soaked and I am not a person who sweats at night.

I was concerned, so I went to Drs and saw a rheumatologist who looked at my pictures I took of my legs and took down my symptoms. He did loads of blood tests ANA included and they all came back negative. He put me on steroids ( a lowish dose he said) for two weeks just to see if my symptoms - aching improved. It did, then returned after I had finished them. He told me to stay out of the sun and go back to him in a few months. Symptoms were coming and going so he did yet another blood test and put me on Hydrochloriquine (probs spelt wrong!!lol) as he said he thinks I have a connective tissue disease but unsure which one.

Joint pain got worse and was feeling in knees, ankles, wrists and a bit in fingers/toes. He gave me a steriod injection which helped for about 3 months. Seems that's worn off! Plus this weather probably isn't helping much either.

I know have joint aches/pain in knees, ankles, wrists, fingers/toes and starting in elbows too. I also get red across the knees and rashes and also ulcers on the inside of my lip that come and go. Went to Drs last wed going out of my mind and needing answers as fatigue is soo bad also. He took bloods but results not back yet. Have been referred now to St Thomas' to see if they can figure out what CTD this is. Which I am pleased about, hopefully I will get answers.

I am really finding this hard to deal with and it is affecting my life so much. I also have IC (Interstial Cystitus/Painful bladder syndrome) which was also diagnosed last year.

My question is really if results come back negative again does that mean I definitely do not have lupus? Also, does anyone relate to symptoms I am having?

In need of someone to talk to as I feel really lonely with this, i feel like I am going mad and almost like no one believes me. Does this make sense to anyone?

Wishing anyone who reads this post well and sorry for the length!!

J

26 Replies
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Hello and welcome to our lovely forum. I'm glad you have found us.

I am sure that many of us can relate to how you are feeling.

It's a frightening time for you plus with an "invisible disease" it can feel like you are fighting a losing battle explaining how ill you feel when no one can really see it.

I was diagnosed in 2013, but I think I'd already had lupus for around 4 1/2 - 5 years at that point. (The average lupus diagnosis takes about 7 years).

So I am now just over 4 years post diagnosis and things have calmed down for me now, emotionally that is. That initial panic has gone.

I know we are all different with lupus, we all suffer different symptoms, to varying degrees and our journey's are all different too but you will learn so much about your illness and how to cope. There is life with lupus. Plus now you are being referred to a Rheumatologist, you will hopefully get a clearer diagnosis and be able to get the right medication for you. It will just take time.

I have suffered a whole host of symptoms, I am photo sensitive and this has caused various skin issues and I've had a biopsy of a photosensitive rash, I have headaches of all types and chronic fatigue and aches and pains - issues with my joints and tendons (I've had steroids injection for bursitis in my hip), hair loss and hair thinning, slight oedema of my hands, feet and ankles, mild anxiety and depression, dry eyes and mouth, extremely dry itchy skin, brittle nails, IBS type problems including diarrhoea, etc. But I have been very lucky that my lupus hasn't involved my kidneys or lungs etc.

As for your questions:

Your GP seems really on the ball. So try to keep a good relationship with him/her. The fact he prescribed hydroxy is a very good sign and he has referred to you to Thomas' is great.

You can have lupus and not have positive blood test results - not everyone gets positive ANA and Anti ds ANA. I've only ever had two positive ANA blood tests and my Anti ds ANA is always within normal range.

I would advise that you look at the Lupus UK website. There is so much information there including leaflets about diagnosis and all of the various lupus symptoms. Read posts here. There is a search facility, top right hand corner. You can search for symptoms or drugs etc.

We have members here with not just lupus but Mixed Connective Tissue Disease and Undifferentiated Connective Tissue Disease etc. (Hope I've got those right). Everyone is welcome, so stay even if you don't end up with a diagnosis of lupus.

We are a friendly bunch who want to help and share our experiences, in order to reassure.

Best wishes and keep us posted.

Wendy

Diagnosis - SLE, mild Reynaud's, mild Sjogren's Syndrome, various allergies, osteoarthritis in my hips and knees and back, varicose veins, history of asthma and eczema etc - Medication - Hydroxychloroquine, Mepacrine, Mycophenolate Mofetil, 2 antihistamines, ventolin inhaler, eye drops and steroids and pain relief when required).

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My rheumatologist diagnosed me on my first visit. He said I have the worse, undiagnosed case he's ever seen. I'm on plaquinil- idk how to spell it--, 50,000 iu vitamin D and steroids which I hate! I've found much more help from essential oils! My suggestion is for you to learn everything you can about using the oils. I use Young Living oils; be sure to use 100% theraputic grade oils. Another huge help is MSM. It's a sulfur supplement.

Pharmaceuticals have horrific side effects.

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What oils for you use? Do you infuse or out in bath? Xx

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All my oils are from Young Living, 100% therapeutic grade. First is a blend- Immunopower. It has to be diluted 1:4 with a good carrier oil. I use fractionated coconut oil in a roller bottle. Apply around navel, on chest, wrists, temples and anywhere else you want! Next another blend called Present Time--key for lupus. And then a supplement called MSM. YL sells this sulfur supplement combined with wolf berries and essential oils, but you can get MSM at a health food store cheaper. (My doctor has me on Plaquinill which is a sulfur drug.)

You have to join Young Living to purchase wholesale. If you are interested in becoming a member of Young Living I can help you sign up. You purchase a starter kit with 10 oils, a diffuser, and some samples of other products. I think it's $150 American. I'm not involved in the business side of the company yet, but I will sponsor you and we can learn together.

I cannot say enough about how much these oils are helping me. I am experiencing hives AND shingles!! It's horrid! I have a copy of the Essential Oil Desk Reference book. I check which oil I need for each symptom. German chamomile is a miracle for shingles!

I'm also putting 2 drops of Frankincense under my tongue 2xday to fight inflammation and it gives me a general good feeling too.

I could write a book; maybe I will!

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Thanks for all the info on the oils. I am going to look into your recs and then possibly message you!!

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In addition to my reply to stm252... I forgot a very important oil blend...Endoflex. I've had inflamed adrenal glands, thyroid issues, ETC,! Nutmeg is a key ingredient in Endoflex. It completely stopped the swelling and pain! It is also helpful on your face for that awful steroid side effect called moon face! Hate that! I weigh 108 lbs, but if you saw a face shot you'd think I weigh twice as much! Endoflex really helps that too. Diluted 1:4

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Thank you for this advice, I will give it a try. Let us know how you use them. Jx

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Hello! I hope you see my reply to stm252. Please try to not stress out about a diagnosis. Stress is the worst thing for lupus. My doctors are great, but they've told me, "there is no cure and very little treatment!" I decided to find help somewhere besides big pharma.

I don't know how I stumbled into this forum as I live in the USA, but I'm glad I did! These diseases are universal. Don't believe 'there's no cure'! I'm a spiritual person - a Christian who prays every day. God gave us perfect medicines which have been hidden because doctors don't want to cure us; they--along with insurance companies and big pharma--want to create repeat customers!

Pure essential oils and pure supplements are the answer. Keep learning and believing,

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I'm not sure that I can agree with you saying that doctors have hidden cures for lupus, as they don't want to cure us?

Here in Great Britain we have the NHS system and if there was a cure it would save the NHS & Government a lot of money in so many ways, including appointments, prescription charges and of course disability benefits for those who are unable to work due to their symptoms. Plus of course this would be denying fellow human beings a better quality of life. Is that what you think doctors want?

Do you take any medication alongside your oils and supplements?

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Hi Benne09, welcome to this wonderful forum, I can relate to many of your symptoms, I have Undifferentiated connective tissue disease, chronic kidney disease and was diagnosed with CREST in October, although I do have a strongly positive ANA and Anti Ro, I too have suffered with IC for many years, bladder pain is horrible! And I also take Hydroxychloroquine.

It’s really good that you’ve been referred to St.Thomas’, hopefully you’ll get some answers. I think I can safely say that we all understand how lost and alone you can feel while waiting for a diagnosis and living with all these symptoms and not knowing why can be scary, this forum is a great place to feel less alone so you’ve come to the right place, I’ve learnt So much from others experiences and guidance too.

Wendy has given you some good advice in her post.

Hope you don’t have to wait too long for your appt,

All the best and let us know how you get on.

Diane🌸xx

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Hi, I can relate a lot to your symtoms, I have been told I have MCTD, at first I thought it was a cop out as I've had so many mystery illnesses over last 5/6 years now with no diagnosis, the only positive bloods I have had is an excessively high RA factor. My Esr has been over 100 at times. I have every symtom of lupus, sjogrens but bloods have never come up positive. I have dry eyes, can't open my eye in morning, joint pain. Inflammation is touring round my whole body. I don't know where it's going next. It's been in my head, lungs, liver, doc not happy with blood test for my kidneys, having them redone on Friday, she has put me on vitamin D and calcium as I'm deficient on this. I get weird rashes as well. Fatigue is awful. Been on high dose steriods for the high inflammation in my head and lungs as I cudnt breath. I've been misdiagnosed with temperal arteritis, HR scan showed I had pneumonitis, have had pneumonia twice now. As I've been on steriods far too long, rheumy put me on hydroxy and steriod jabs now and again. I feel I'm a ticking time bomb, never know what's next. Rheumy says all my illness are linked with inflammation being the key link, it's taken all those years to get this far, so frustrating. I wish you well in getting a diagnosis xx

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Welcome! I think Wendy and Lizard have put it very well. I have a variety of problems and when I see a rheumy it's at a connective tissue disorder clinic. "Lupus" had been muttered a couple of times and I have a definite diagnosis of Secondary Raynaud's. The primary diagnosis doesn't have a name, but is treated in the same way as others here are with lupus. That's good enough for me. Although my continuing care has not been the best, the initial testing and investigations were first class. At no time was I not taken seriously, though in my innocence I thought they were a bit over the top.

I'm glad you've found us. There are a great bunch of supportive people here.

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Hi J,

Welcome to the LUPUS UK HealthUnlocked Community!

Flu-like symptoms, night sweats, extreme fatigue and joints/muscle aches and pains are all common symptoms associated with lupus. To find out what other symptoms are associated with lupus, you can download or request our free information pack here: lupusuk.org.uk/request-info...

We published a blog article on ‘pain management’ which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...

Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem. Rashes can be induced by sunlight as well as other factors which are discussed in our ‘Lupus and the Skin’ guide; lupusuk.org.uk/wp-content/u...

Many people with lupus experience a flare of their symptoms when exposed to sunlight. The most common symptom is for rashes to appear on the skin, affecting areas that are frequently exposed such as the face, neck, hands and feet. We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...

To read our blog article on ‘managing fatigue’, click here: lupusuk.org.uk/managing-fat...

It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

Although dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk

Before attending your appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...

Please keep us updated, wishing you all the best.

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Thank you all for your kind words and wisdom. You all almost bought me to tears as I feel so alone, even though I have a great partner who is amazing and does his best it is good to be in touch with other people who have experienced the same/similar issues. My appt is 19 March, wish was sooner but you know what am just glad I am being seen tbh. I will keep you all updated. Hope you all had a good day.

J X

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I do have a quick question if your ANA is negative, how would they diagnose you with Lupus? Do other tests have to show something? If so, which ones? I was told that unless ANA positive they will not diagnose you with Lupus even if you have some of the symptoms, is that right? Thanks J x

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I was diagnosed with ANA neg lupus but my presentation was compelling. I think I'm the exception to the rule but there are a few of us around. I'd been diagnosed for 11 years before my ANA nudged weakly positive but it is normal now despite my other blood tests showing a worsening of my condition overall.

It is the treatment that matters more than the label. Best of luck at your appt xx

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Thank you. I just hope they put me on the right treatment regardless of the label, I agree. The reason I am worried is that my aunt died a year ago and they never found out why, her kidney/liver failed and after reading up about Lupus and knowing all her symptoms I believe that she had Lupus. They thought it was some tropical disease - funny that she didn't go anywhere!!! was a rubbish hospital. That's why I want to be monitored correctly so badly. Scares the life out of me. Thank you for your response so quickly, I appreciate it. xJ

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Hi there, I had/have almost every textbook marker of a rheumatological disorder. Hair loss, lymph node inflammation, swollen and red and painful joints, myalgia, significant weight loss, tachycardia, SOB...the list goes on and on and on. And before my diagnosis I kept getting sicker and sicker. But my blood work was normal. However, after a few more trials the AnA turned positive. Sometimes it takes time. Sometimes my doctors told.me there is a small percentage of us that are seronegative. A good rheumy will consider the whole picture. I am so sorry you are going through this. It's so difficult. I was just diagnosed and I am still suffering. But I understand the yearning for someone to name it

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Thank you for understanding, feels good not to feel like am going mad! I appreciate it xJ

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Another question - when my knees hurt both my knees either go red across the knee or a round large red mark at the side of my knee and then a bruise appears and then disappears. Is this familiar to anyone, happened again today. Am on a roll now with questions!! Sorry about this lol

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I can relate to your knee symptoms. I get the red areas, mostly they are at outer edges of my kneecaps. They will often migrate around the kneecap and the pain tends to follow them. I don’t get the bruises but there is no rule book where AI diseases are concerned! For me, this pattern may be more of an inflammatory tendinitis ie where they join the patella as the pain, swelling and redness will often involve more of the tendon heading up my thigh.

The body can behave very strangely!

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Thanks x

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I can’t help but I would say take photos of any symptoms like this, that come and ago. Photographic evidence has been crucial for me. It’s sods law that when you turn up at an appointment those symptoms have gone. X

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Hi Benne09, I wasn’t going to reply, until I read Wendy39 reply, that all are welcome. I have primary sjorgens disease, no lupus, but some of your symptons are similar. For example the joint pain I experienced before treatment gradually got worse, keeping me awake at night, hips, and fingers, the worst. I also had v painful bladder constant pain / infection after infection. The problems with my bladder went on for years, various operations/ treatments etc. I also have other symptons as a result of sjorgens eg limited tear function in eyes / dry mouth/ salivary duct complications /digestion issues/ anemia/ low sodium/ gynae problems.

After taking hydroxychloroquine, for a year , the bladder pain and joint pain has improved considerably. In fact I have gone generally from being a complete mess to functioning again. (At one stage the diagnosis was Fibromyalgia,as I was in so much pain, I could hardLy walk. Now that has been dismissed.)

There can be a link sjorgens and bladder issues according to my rheumatologist. I am just suggesting you may want to check that sjorgens is tested too at St Thomas. I had a mildly elevated ANA, but positive R O antibodies. Due to symptons / positive ANA/ RO antibodies, diagnosis was made. Another Indicator for sjorgens is a lip biopsy.

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Thank you so much. I will research Sjorgens as I don't know anything about it. You have been very helpful and I will ask them to test me for this at my appt. J X

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I am new to this forum and glad to read the content. I was diagnosed with MCTD about 2 years ago with positve blood test. Iwas diagnosed with GERD two years prior to that. My wife has also been diagnosed with RA with negative blood test for RA but has been disabled by the symptoms.

I have controlled my symptoms with hydrochloriquine and actually reduced my orginal dosage by half which is a maintenance level. I also reduced the anti-inflamatory med (mobic) to as needed for flare ups. I reduced the meds because they irritated the GERD. I also changed my diet and lifestyle to help control the progress of the disease. Try fruit smoothies with tumeric and aloe in the mix.

One thing folks might want to get tested for is hyperparathyroidism. Many of the symptoms mirror autoimmune diseases and could help explain the negative test markers. My wife tested positive for hyperparathyroid with outrageous PTH values. The high pth value is coupled with vitamin D deficiency and calcium values that are not normal. This combination sets up leaching of calcium from bones and helped explain why my wife had multiple spontaneous bone fractures.

She had two of the four parathyroid glans removed and that has slowed the progression of her symptoms.

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