I wanted to quickly get on here and share some thoughts. I have struggled with my health since I was 15, I am now 25. It is honestly hard for me to imagine not being sick in some way now because it has been so long. Through all of this, I have been gaslighted and dismissed by so many doctors and other medical professionals, often having my health challenges blamed on psychiatric problems. Being autistic does not help this, and I now almost always choose to with hold this information when going in for appointments. This combined with symptom patterns that are very sporadic and overall very odd, and never completely fitting diagnostic criteria has made it incredibly hard for me to validate myself through all of this and not turn the gaslighting on myself. I have many classic symptoms of POTS, but my heart rate issues are unique. Rather than staying elevated for a time, mine elevated and immediately drops just as rapidly. It’s painful, and exhausting, but doesn’t fit diagnostic criteria so is ignored or I’m told it’s anxiety. I have many symptoms of autoimmune issues, but my body refuses to give up any information beyond positive ANA. It’s like swimming in a vast ocean of “what ifs” knowing that the answer is somewhere in the water with me, but my body is the compass and the compass is giving teasing hints but never pointing in the right direction. This journey has left me exhausted physically, mentally, and emotionally. It’s a constant fight to validate myself when everything I have to work with is so vague, and I don’t know whether to pursue a potential diagnosis I feel strongly could be an answer when I don’t fit all of the diagnostic criteria. This has forced me to give up hobbies I love, and extend my college degree by over 2.5 years. I am so grateful for the people who stand with me, and the doctors and medical professionals who work tirelessly with me to hopefully someday find answers. In summary, if you find yourself in a situation where your symptoms don’t match any diagnostic criteria, if your blood test results are vague and giving teasing hints, if your symptoms are unpredictable and sporadic and confusing and frustrating, if you find yourself drained and discouraged and doubting the validity of your challenges, know that what you are going through is valid. Keep fighting, you will find people who help you, you will find answers and treatments. Just because you don’t fit diagnostic criteria exactly, or your google searches leave you more confused than ever, doesn’t mean what you are going through isn’t real. Stay strong and validate yourself.
Learning to validate myself : I wanted to quickly... - LUPUS UK
Learning to validate myself
BrooklyneDeanne - your story is heart-breaking. Many people don’t fit neatly into categories. Your positive ANA is not insignificant! Have you ever thought of going to Mayo Clinic? You are the kind of patient they see - when others can’t diagnose. They have an autonomic unit where they do specialized testing.
You are so brave to continue with no clear diagnosis or treatment. If you ever want to pursue a evaluation where they specialize in rare diseases, you might want to go to Mayo.
XxK
Hi, thank you for responding. I agree that somewhere like Mayo Clinic is a good next step. I’m at college right now but I see my doctor in 3 weeks when I fly home for spring break. I am going to talk to her about this option then. Right now I feel like my dysautonomia symptoms are really taking over, and autoimmune is more dormant right now. That could change at anytime, or there is so much similarity and overlap between them I’m not sure which is which. I feel very strongly that I might have POTs, and several people (who have this condition) agree. It’s a unique presentation of it though, as my heart rate spikes very quickly and then drops very quickly. HR is often high during normal activities but drops the instant I stop moving. I deal with inability to regulate body temperature, hand tremors, excessive sweating, fatigue, blood pressure that doesn’t always regulate very well, blood oxygen levels that will sometimes drop, bradycardia and tachycardia, heart palpitations, shortness of breath with light activity, neuropathy symptoms, headaches, etc. All of this I’m learning is common with POTs. I’ve been told my heart rate spiking and dropping so fast isn’t normal, but I’m still trying to find answers about what is actually happening. You’re absolutely right, many people don’t fit criteria, and that helps me to keep going because I know I’m not alone. Would somewhere like Mayo Clinic know how to consider more unique presentations of conditions?
Mayo does extensive autonomic testing and have ways to evaluate for autoimmune dysautonomia. Everyone with dysautonomia does not have POTS. My neurologist said tilt table test showed I have trouble keeping both blood pressure and heart rate up. There are different combinations.
People from all over the world go through Mayo for diagnosis. They have housing to make things easier for you. I have had two sets of testing sent to Mayo — and I live in New York City.
Dysautonomia can be debilitating. Autoimmune diseases can attack these fine nerves, and maybe that is what is happening to you. Do you have GI symptoms?
XxK
That makes sense. My BP tends to be on the lower end of normal, if it does go hypertensive or hypotensive I’m usually sitting and that doesn’t happen too often. It doesn’t change with standing, but heart rate does and sometimes my blood o2 levels will drop a little bit when I stand. Symptoms are extremely sporadic. They can last anywhere from a few minutes to a couple of weeks. For GI symptoms I had really bad GI issues for a few years, but not as often now. I definitely still have GI problems though.
I have a similar experience as only ever have mildly positive Ana. Drs treat my symptoms separately or dismiss as part of my mental health diagnosis all very demoralising.
Same here. High positive ANA, no other positive blood tests. Everything blamed on mental health.
Dealing with sporadic symptoms and the unknown is exhausting, and dismissive or openly hostile medical professionals takes a real toll. My journey to a Lupus diagnosis took over 25 years and the trigger for someone to actually consider an autoimmune disease was me losing all of my hair which in itself was devastating.
Keep going, keep seeking answers and do not let gaslighters or doubters make you question what you know is real.
Take care.
Thank you for sharing. I’ll keep going, one step at a time. ❤️
There must be something wrong when you don't have the health and energy of a 25 year old. You should be at your peak. I was about your age when I felt something was wrong, my energy levels were dropping but nothing specific. I first ignored my deteriorating health as I had a small child and was busy trying to cope with that. During my thirties things got worse I lost a kidney and had a brain haemorrhage but still doctors said I was just unlucky. I spent my forties going to private doctors and using the NHS but still nothing positive. I could not live a normal life, by this time constantly tired all day it felt like the early hours of the morning in my head. By my mid forties I was sent to a clinical psychologist who said it must be my past health issues or stress. Stress! the only thing in my life stressing me was no diagnosis. In the end it was a simple cyst on my eye that got me to a Rheumatologist finally and a Sjogrens diagnosis and then my only positive blood test was dsdna which gave me the lupus diagnosis finally at 51. I didn't have the internet or chats like this early on. I had a suspicion by the end that I at least had Sjogrens. Had I been diagnosed earlier I may not have lost a kidney at least. Please find a specialist in autoimmune disorders then don't give up but remember as best you can live your life too. I bought up a great daughter and I'm glad things didn't eat me up and take all my attention. I hope your journey gets results and you get the medication you may need to keep you as healthy as possible. Good luck.
Thanks for sharing. Being sick at 25 is so frustrating, especially not being able to keep up with my friends most of the time. Answers are out there!
Don't give up searching but try and live your life too to the best of your ability. It's easy to become obsessed and life passes you by. Xxx
I totally understand. After 14 years of this illness I have despaired. At times my ANA and dsDNA have been strongly positive, my leukocytes extremely low, only a trace of Vitamin D. Rashes, ulcers, widespread pain, low grade fevers, chronic fatigue, gut pain, migraines, balance problems. Diagnosis of Lupus, then it’s not Lupus it is Bechets, then not Bechets but UCTD, then it is Lupus and Bechets and Fibromyalgia, then the gaslighting you talk about..it’s Fibro and “ hysteria”. I went home to my hubby and said am I making myself sick? Is it all in my head? Then the next Rheumatologist sneered in my face when I said but what about the Lupus? He patronised me saying Lupus is something you have never had. Bechets? He waved his hands and said look you have mild UCTD just go and enjoy life. I came home and thought what is the point continuing to see these Consultants who dismiss and condescend ? My new Rheumy at least listens and feels I have more Bechets symptoms but there are many that cannot be explained by that diagnosis. After 14 years it is a start. I sincerely wish you all the luck in the world in your diagnostic journey and treatment. Xx
What a long, exhausting road to answers. Answers and treatments are out there. Thanks for sharing your story!
Sadly I think people in Wales where I live receive a very poor service in general. It is sad however that wherever we live we are generally treated with scepticism and gaslighted during our quest for help and diagnosis xx
Healthcare where I live isn’t great either sadly (I’m in the US). I know good doctors are out there though, and I will keep searching.
drs and medical people must think we actually want to spend half our lives going to appointment etc, it’s not stress, we’re not hysterical, malingerers menopausal, PMT suffering women, WE ARE JUST UNWELL with something. New symptoms resulting in bloods showing raised levels of amalyse caused dr to say he had to rule out ovarian, liver or pancreas cancer! Next blood tests the level has dropped but symptoms remain and I’m still ill. Dr says I’m anxious about my health! So I said well you said cancer not me so of course I’m anxious NOW! He patronisingly asked what tests I wanted, I said I’ll have what you think I need. He gleefully says colonoscopy and gastroscopy like a punishment for not being clearly enough unwell for him to see, even though three stool tests were all negative. ( He dismissed any AI possibilities even though the smallest search online brings up AUTOIMMUNE PANCREATITIS/HEPATITIS ). I was surprised though when the words Adult Onset Stills Disease jumped off the page at me in relation to these illnesses saying Stills sufferers are more susceptible and interestingly an increased chance of NON Hodgkins Lymphoma which my dear Dad died of late December. It’s the first time my actual condition has appeared online other than in medical reference on the Disease itself, I was shocked to see the words AOSD. Any way my new symptoms are physical not in my head, he can’t deny a stone weight loss in a month when it’s fact, if he would see me rather than call me saying cancer words we might get somewhere. I shall go for his mean tests, could take many months I guess but I actually think I have chronic pancreatitis possibly caused by STILLS or alcohol or both but have more chance of getting diagnosed as a white witch!
I am so very sorry lovely. What a smug, arrogant Rheumy you have. He should try suffering every day and not be “ anxious” about the cause. He would soon show more empathy and understanding. It is hard to wake up each morning and go to bed each night in pain. It wears you down mentally and physically and all we ask is that the medics listen and try to help. I get the gastroscopy and colonoscopy if this were your initial bout of chronic ill health but now? Having had three gastroscopies in quick succession I know how uncomfortable and at times painful they can be. One of the times I had bleeding sores all down my gullet and the pain kept making me try to gag which of course I couldn’t. The sores were dismissed as infected thrush despite biopsies coming back clear. I have recently been told it is Bechets. I wish you so much luck for these investigations being as painless as possible and for a change of Rheumy to someone who treats you with care xxx
oh Ceciky that sounds dreadful and I’m so sorry it was like that for you, NHS website describes the processes as uncomfortable, I’m dreading them both after reading your experience. We are considering paying for an MRI to speed up the diagnosis. I don’t really know what to do TBH and it’s a horrid feeling thinking one may have a cancer of some sort and yet getting very little acknowledgement from the GP.
In addition to my Dad(86) dying on 29th Dec of NHL my step Dad(87) also died on the same day from many complications. I was unbelievable that they should pass on the same day. Then my ex husband died (68) of heart complications and sepsis on 17th February. Seeing my (adult) sons distressed was harrowing but I started feeling unwell late November long before all this so I dispute the stress suggestion!
Good news is that a new baby was born to my late brothers son so three funerals and a baby 😀
What a terrible time you have had. I am so very sorry for all of your losses and of course your sons, Of course stress affects us negatively l When you are just about coping and emotional stress hits you it is so easy to tip over into not coping. However if you were not sick in the first place you would cope better. They seem to fail to recognise that. With the gastroscopy it is uncomfortable there is no getting away from that but it is over relatively quickly. You can choose sedation if you are very apprehensive. I didn’t have it because I wanted to get out of there quicker so I chose the throat spray. Compared to the pain you are suffering currently it will be an uncomfortable 15 minutes maximum. The colonoscopy is more intrusive but again uncomfortable and at least with that you can tell them to slow down or stop if you need to.
Congratulations on your new great nephew. Much needed by your family at this difficult time I can imagine.
It is only my opinion but MRI scans are a considerable cost so if I were you I would get these tests done first and take it from there. Whatever you decide please keep us informed and good luck xxx
thanks for the reassurance, I’ll opt for the sedation and sleep through it hopefully as my throat is already like broken glass and the other end can be sore too 😝May I pick your brains about MRI scans then? Who, how, where, when and. It’s etc.
Thanks Cecile.
private MRI’s where I am cost £1500- £2000 , extra for an open scanner. You will be ok, the thought is worse than the actual tests. I had one out of three that was painful the others were uncomfortable as was the colonoscopy. It is never pleasant getting these things done but once done you will have the reassurance of biopsies and no longer have to speculate which will be much preferable to where you are now. The worry of cancer is awful. I recently had a camera to look at my vocal cords as my voice is very hoarse. Both my Rheumy and GP said potentially cancer and it turned out to be acid reflux scalding my vocal cords so huge relief and treatment. Xxx
even more interesting as I’m constantly hoarse and have a chronic sore throat that I attributed to Stills as it’s a key symptom and was the herald of my illness all those years ago. Heartburn and acid reflux was the start of this new episode and what drove me to ring the GP as I’ve never had it before and with the other new symptoms I was wiped out. This made GP do tests revealing very high amylase levels hence he’s talking about cancer. He said reflux was a symptom of pancreatic issues so who knows Cecily. Some days I feel so dreadful I think I might not wake up if I have a nap. Anyway tests pending so let’s see. I’m mot spending that sort of money on a MRI scan though as neither of us are working as covid closed the companies we worked for. Pension is 6.5 years away yet so we are living on hubbys professional pension and savings until then. I thought a scan would be about £750.
Thanks for sharing your experience and knowledge 😀
It is so hard with our system of compartmentalising conditions. No one seems to link the symptoms to one cohesive plan. It is soul destroying. I hadn’t seen a Rheumy for three years and I was so apprehensive my BP set the alarm off but for once I was not talked down to or patronised and I felt listened to. It is all we want isn’t it? Just for someone to listen and try to help. Hopefully the gastroscopy will highlight what is causing your problems. I sincerely hope you get it done quickly and that the results are beneficial to your treatment lovely. You have suffered long enough xxx
thank you CP 😃 I have no Hope of being listened to unless I call the Samaritans instead of my invisible locum GP 😂
please don’t give up hope. Change your GP. I have been gaslighted, condescended and ignored, even blamed for my health conditions and “ lifestyle choices”. I lost it at that last remark and made a formal complaint. I was blatantly fat shamed. I now am at a new surgery which I was dreading but have spent 45 minutes with a senior nurse, a trip,e GP appointment, two lots of bloods and a urine sample and a referral to a Gynao Urologist in the past month alone. After 14 years of ill health I finally have a GP and Rheumy who are listening. Do not accept it if they won’t listen. You deserve better xxx
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