I am really confused due to unhelpful doctors (two saying very different things) and I hope someone might be able to give me a bit of insight.
I've been researching a load of conditions, and all my symptoms can only be accounted for by lupus or scleroderma, but my blood tests for ANA, inflammatory factor etc. have all came back negative. The tests did rule out conditions like hypothyroidism and coeliac disease One doctor told me this doesn't rule these two conditions out, while the other one said with certainty that it would show something if I had lupus or something similar. The second one thinks it's all in my head, which is lovely.
My symptoms are:
-Severe joint pain and weakness that moves around all the time in my lower and upper body. I'm 20 years old and I've been using a walking stick for weeks. However, now I am on an anti inflammatory (Naproxen) that has really helped. My knees sometimes buckle.
-Muscle aches, weakness, numbness and pains, particularly in legs. My thighs get really tense sometimes involuntarily, and feel rock hard.
-Burping and hiccuping started months ago, then turned to acid reflux constantly. Sometimes I am actually sick, but it's mostly a frothy bile liquid (sorry if tmi) with other liquids or food consumed. There's no pattern depending on certain foods etc. I can have three cups of tea in a day, but its only the third one that makes me sick, for example. Feels a bit like something, a type of liquid, is stuck in my throat.
-Serious bloating. Started as a random thing after meals, but is getting more and more constant. I look pregnant half the time, despite losing a stone in about six months
-Constipation that can go on for days, only to have 5 BMs in one day! (sorry tmi again)
-Rash that sometimes comes up on my chest/neck. Permanent rashes/discolouration on hands. I also have Reynaud's phenomenon, but have for years. My hands often wake me up in the night wish severe burning sensations, a bit like hot aches.
-Fatigue that is so bad that I feel like I have a brain fog and dizziness half the time. It's like waking up every day with a severe hangover. It doesn't matter whether I have 6, 8 or 12 hours sleep, I still feel exhausted. A trip to tescos makes me feel like I need a lie down.
-Upper abdominal pain, mainly on my sides of my ribs.
Does anyone else experience this?
Sorry, this post has became very long-winded. I am just so frustrated and fed up. I've had to take out a year from uni while I try get a diagnosis. However, because I had a traumatic incident early this year, one of my doctors is convinced its all some sort of depression that's causing me to imagine problems. I do not feel depressed at all, and know that I'm not imagining this. After the incident endometriosis symptoms flared up shortly before all of these symptoms came to light, and I have had a confirmed diagnosis of endo now. I'm wondering if stress has triggered both? Is that possible? And is it possible that I might still have some AI condition, despite negative test results?
I'm sounding very desperate now, but if anyone has been in a similar position to this, or knows a bit more on the subject, any help is greatly appreciated. I've demanded an appointment with a rheumatologist, but it isn't for a while yet, and want to consider all avenues rather than wait around when I'm barely functioning. I'm wondering if there are other conditions I should be looking into.
Thank you for reading all of this, I'd love to hear from you.
Rhiann
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Rhiann
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Huge disclaimer that this is not medical advice, but just my experience. Also, I'm in the states so medical care may differ somewhat.
I had some of the things you mention: extreme fatigue (never enough sleep), extreme joint pain (like cry out in pain when I turned my wrist for example), mild constipation, raynauds, severe burning in hand knuckles (felt like a lighter was help to hand). Fun!
You bloating sounds like celiac allergy/reaction, but I've never had it, so don't know.
Was diagnosed w/ Lupus as a couple of markets were high (Smith Antibody). I went on plaquenil and that helped the pain simmer down but overall still most of the symptoms mentioned above.
Started experimenting w/ food and 2 years later none of these things including having weaned off plaquenil for 4 months. (Constantly monitored by Rhuemy Dr). I eat like a saint now. No processed foods (sugar, wheats, gluten free substitutes, dairy). I mostly eat chicken and veggies. If I make a dessert, I make it paleo style.
I also went to a nutritionist who did an IgG test and I am mildly reacting to everything I eat which they diagnosis as leaky gut. I know this can be controversial so again, not dispensing medical advice...just a recount of my experience. Essentially, food is making my immune system going into hyper mode so when I eat food that causes minimal inflammation (chicken, veggies, seeds), I feel almost normal.
Also, one of the best things I started taking in addition to the long term food intake changes is a high powered probiotic and a mix of chinese herbs. (Brand here in states is Gut Pro; herbs via merryclinic.com/lupus/treat...
For constipation, magnesium citrate drink before you go to bed. Again, be careful of things w/out researching and talking to medical professional. Also, a warning, results can be...well...explosive.
I take a variety of other things like easily absorbable Vit D (mine was really low), fish oil, daily vit, aloe vera juice. Oh my. It took me 2+ years to figure all this out, so if you decide to make changes, pick one thing at a time otherwise too overwhelming.
You need to include 250mg of Vitamin E if you are going to take the fish oil otherwise it doesn't work as well I'll get my notes on it all and can explain it better for you.
also you want to take evening primrose oil, walnuts which have the right balance of omega 3 and 6 fatty acids and battery reared hens not free range as they don't have the fatty acids in the right balance, the battery eggs have the 8 essential amino acids in the correct balance for the body also cook your eggs at no more than 50 Celsius, all amino acids denature between 55-75 celsius the older you get the less your body is able to determine that they are denatured or not and become toxic for you,
And to rhiann I would first go and see a highly reputable acupuncturist to try and clear out any blockages in your energy, some acupuncturists are amazing and others are not so word of mouth is essential in finding the best one
Also try and remove any oestrogen chemicals from your diet like mercury BPA sodium lauryl sulphate and dairy products which are really high in oestrogen mercury fillings are lethal to certain people.
Hello Rhiann, so sorry to hear how you've been shrugging, that's terrible.
I am 21 years old and have the exact same symptoms as you! Acid reflux, muscle aches, bloating etc...I've just been diagnosed with endometriosis (October) and have had a positive ANA test and I'm waiting to see a specialist as my GP thinks Lupus.
Id say push to see a Lupus specialist and don't take no for an answer, some people have negative ANA and Lupus, it's a very tricky disease and isn't the same in everyone.
I don't have any great tips or insight, I just wanted to say that I am going through the same symptoms as you, as well as the endometriosis. It's not in your head and it's not normal! So push to get an answer, best of luck, keep us updated and listen to your body! Xxx
Totally agree. I found a fantastic online site called Molly's Fund. It's one of the few sites that discusses lupus testing in detail. Bottom line is they just because you may test positive for certain titers does not mean you have Lupus and visa versa. It's an elusive disease and mimics many diseases and/or overlaps some. Tricky to diagnose. They recommend to get a second, third opinion until you get some answer's.
So sorry to read of all your health problems and the way your being treated by A couple of Consultants. Sadly you are not alone in having to battle for recognition because of negative blood results. I have had to for 29 years and so have others on this forum.
Have you seen a Gastroenterologist?. They could treat your stomach symptoms , Losec is good for acid reflux. I'm sorry you have endometriosis but I'm also glad you've got a referral to a Rheumy. You could ring the clinic and ask to be considered for a cancellation to help the wait. Stress can definitely trigger these auto- immune conditions . They are a nightmare to live with and treat when they don't show in bloods. Hopefully the Rheumy you see will still be willing to treat you without the blood results as that's what you need!. Hope I've helped and let us know how you get on. Good luckX
Yes I've suffered with similar symptoms - that's a very familiar list (although I had no actual being sick). I was first diagnosed with ME due to the joint aches, muscle aches, weakness and fatigue, I had bloating, pain and constipation (and sometimes the opposite too). A few years later the joint pain increased and my blood tests showed a higher ESR result and positive ANA and I was diagnosed with Lupus. At my worst (needing crutches to get around due to terrible inflammation in my hip joints) my ESR was 30.
I tried going wheat free for a few years and this seemed to help my digestive issues, but didn't resolve the inflammation in my joints. 2 Years ago I found that going gluten free and sugar free (and also limiting my dairy intake) totally sorted out my digestive troubles - AND my inflammation. My ESR is now normal and I recently had a negative ANA for Lupus. This is because (as Calafia says above) people who have autoimmune issues usually have something called 'leaky gut'. My research reveals that this is where the gut has been damaged by a variety of things (antibiotics, NSAIDS, fungal infections, GMO corn foods etc) and becomes more porous letting larger proteins into the blood stream, which the body attacks, and gets confused about what to attack mistaking it's own tissues for the 'foreigners', causing an autoimmune response. Here's what Dr Amy Myers (a functional medicine doctor) says:
"Most people with gluten sensitivity have no digestive symptoms at all. In 2002, a study published in the New England Journal of Medicine was able to link 55 chronic diseases to gluten. I often get asked, if gluten can cause this many health issues, why don’t more physicians know about this?
When something new is discovered in medicine it can take an average of 17 years for this new information to make its way into medical schools and clinical practice. Much of the research surrounding gluten sensitivity is not 17 years old—in fact we’re just now beginning to scratch the surface in understanding gluten’s role in many diseases." amymyersmd.com
Now if I accidentally get 'glutened' I immediately get stomach pain with painful bloating, then I feel flu-like aches all over and the inflammation in my joints can flare up. So the link between gluten and inflammation is very obvious for me now.
Gluten isn't the only enemy. Other things can trigger disease. For me it was PTSD. I had a traumatic thing happen in my early 20's which I only later realised was a trigger. Stress is a MAJOR trigger. I recently went to see a 'Somatic experience' practitioner who helped me resolve the trauma and now I feel a lot better. I'd been suffering from anxiety and depression for years and didn't know the cause, but now I get it.
Obviously, I've been on a long journey with my health problems (I'm now 42) and I'm now at last finding what works for me. It's a personal journey and everyone is different. I just hope that by sharing what worked for me I can help you and others.
By the way, I tested negative for celiac disease but I was already wheat free when I did the test and so it wasn't a true result. But it is being much more widely recognised now that there is a 'non-celiac gluten intolerance' going on for many people.
And I should also add that going gluten free was quite challenging and should not be taken lightly - it's not a fad diet! Once you have given up you may never be able to eat gluten again (but it might be worth it if it stops the horrible symptoms !). It's good to look at your whole diet with a professional and make sure you are getting a good balance of nutrients.
I'm sorry to hear how much you are suffering - it must be awful. I am lucky ( if you can call it that) to have a clear diagnosis of Lupus as the key blood test is always significantly high. I am currently experiencing a flare which is not responding to an increase in medication. My symptoms are almost entirely fatigue. Others come and go but are pretty minor in comparison. My blood tests are not suggesting any signs of this flare. My ESR is ok - that is the key indicator of inflammation. The docs have run every test they can think of to rule out other things that might be causing the fatigue. All were clear. I am on 25mgs of Prednisolone now and maybe am 60% well. I can work part time but wouldn't manage a whole day. The next step for me would be a different drug - azopriothin - which is an immune- suppressant - and they are reluctant to suggest it when my blood looks ok. I'm not too keen on it either. None of this helps you I know but I just wanted to flag up that even when you have a diagnosis things are not always straightforward with Lupus. I find the specialists do usually understand and believe me. Even though technically I could be making it up!
So sorry you are suffering so and at such a young age. I understand completely even the 'tmi' pieces; which incidentally for me are not 'tmi', but relevant to our suffering and solutions.
I started my symptoms in my 40s, but then after surgery, drugs and complications plus a lot of grief from loss of close friends and relatives, I developed so many more terrible symptoms just as you describe.
Trauma and stress can certainly cause flare-ups for me, so I take time out when I need to and meditate and pray - this is very important for me - my physician and my medication!
Like others on this site, I sought complementary help - it was brilliant. I came off all my drugs that were prescribed to right the damage of the conventional treatment and went on the diet and healthy lifestyle route because I knew I would die if I carried on the way I was going.
It was very difficult, but I knew in my heart it was the only way.
We are subjected to so much toxicity these days from dental amalgams to chemicals in the air from aviation and traffic fumes, pesticides, etc. My body was just at saturation point.
I suspect I had been coeliac all my life, but like others had already come off grains when my GP decided to do a coeliac test, so it would have been pointless and no cure anyway, so as I was feeling better by eating no grains, I told my GP I would rather not go back on gluten just to have the test and make myself ill again.
I am sure this is why I ended up in hospital in the first place with a bowel and bladder prolapse; I wasn't digesting grains, not just gluten.
However, the doctors didn't listen to me and instead of a bowel operation, they did a hysterectomy when my periods were normal and that wasn't the problem. I became ill under the anaesthetic and they brought me out and couldn't do the bowel repair, so I was left with the problem I went in for!
There were numerous other complications and consequently, I wouldn't trust doctors with my life and health ever again - I almost died.
Instead I saw complementary therapists; a naturopath, kinesiologist, nutritionist and homoeopaths. I couldn't take acupuncture - my body came out in bruises all over with the needle insertion.
I can't take supplements either - a supplement supplier said my body needed to do it with food.
However, there is a lot about the way wheat has changed over the last 80 years making many intolerant of the modified protein in it.
I now eat like Calafia - again not easy because I rarely eat out and make sure I prepare all my own food to ensure no nasties in it that could set off a flare.
I am so sensitive that if I eat too much I can get a flare, so I use muscle testing (kinesiology) to see what I need.
Whether we suspected lupies are a different breed, I am not sure, but we are certainly different that is for sure.
I thank the universal energies for every small mercy now - the rising of the sun, the moon and the stars - the blue sea and beaches, green grass and flowers because I know what is important in my life.
I am also Electro-sensitive which I suspect many lupies are, so be careful around wifi, etc. - I have to avoid it as much as possible - get shooting pains in my head and body for example when in supermarkets or near masts, etc.
I wish you all the best, but it is all about listening to our bodies from my experience and not letting our heads rule our lives.
I have learnt so much from my experiences and I do my best to keep positive and I fight for good causes now including production and supply of good food supplies because our bodies are likened to cars, we cannot run without the right petrol. We wouldn't put petrol in a diesel engine or vice versa and we are all different types so we need to find out our metabolic type in order to give our bodies the right food.
It certainly is a challenging learning experience this life, but I know of no doctor who can cure my problems!
HI. I have RA and hypothyroidism rather than Lupus but mine has moved sideways and I have now got Sjogren's with a progressive small fibre neuropathy that is very painful and is more commonly found in Lupus than with RA. My blood was positive for rheumatoid factor and my ESR has always fluctuated and often been pretty high. However I'm under a neurologist just now and he is testing me for immune mediated neuropathy in a few week's time. It is all taking forever to get things properly diagnosed and treated so I've learned to experiment very carefully on food elimination and exercise and look after myself very well over the past four years since it started.
I am very sensitive to many drugs and have had to stop taking nearly all those I've tried so have applied the same kind of dietary changes over the past four years that others recommend here. I also have frequent bouts of upper abdominal pain, very dry eyes, nose and mouth, Rosacea on my face and a long history of allergies and circulation issues. When I was younger I had non specific urethritis for many years that was thought to be pelvic inflammatory disease and a lot of trouble conceiving my three sons.
I do think a lot of autoimmunity begins in the gut and there are many things we can do to improve our general health that will also help with the arthritis side of things and reduce inflammation - which is key. I
find singing in a choir, keeping my brain active no matter what, getting fresh air daily (dog walking) and exercising (yoga, tai chi, gentle aerobics etc) all really help to keep me going keep the arthritis side of
things at bay too. I still get exhausted and still have nerve pain but I'm learning to live more in the moment and do the things I can do for myself to manage my symptoms.
Hi Rhiann. My daughter was 19 when she started to get bloating, nausea and abdominal pain (cramps). She saw a gastroenterologist who counted out abdo problems but pointed her in the direction of lupus as she had the butterfly rash appearing.
Hi Rhiann. So sorry for your troubles. Sounds like Lupus to me. I was diagnosed just before my 60 th birthday a year and a year and a half ago. Many symptoms the same as you. Get in to see a good rheumatologist as soon as you can. Thoughts and prayers are with you.
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