Newly diagnosed and feeling lost / dont know what to do now!

In May of 2015 I started having stomach pain and vomiting. initially thought it was a stomach ulcer and was diagnosed as such, after 6 weeks of treatment i was getting nowhere, tried a new medication and still no results. By August was sent to a specialist and for an ultra sound as it was now thought to be gall bladder.

That was all clear (other than finding i only have one kidney!)

more gp appointments, blood tests, gastroenterologist and a gastroscopy no answers. CT scan, again nothing. stomch emptying study ''essentially normal / within normal range''. So no answers! I have stopped vomiting all the time (at first it was 5 times a day and now im just nauseaus without vomiting) I cant eat anything acidy like fruit, spicy, no coffee and no alcohol so very bland diet for 14 months now! ive lost around 5 stone, 3 of which were the first couple of months as i just couldnt eat / keep anything down!

I was referred to a rheumatologist as gastro said EDS was a possibility as i have hypermobile joints and some pain (back pain for years now sometimes so severe it made me sick in past and cant lay flat on my back) as well as headaches and sensitivity to light.

I had a chest xray prior to visit as heart concerns (ive been having dizzy spells and palpitations / rapid heart beat symptoms too but blood pressure ok) just to speed things up (gp said i may be sent for an xray and no diagnosis until after that so best to be on the safe side)

At Rheumy appt i was in the 10 minutes. did the basic tests (which if you google EDS test is the first thing that comes up!) and hes trying to get rid of me. said probably EDS (no explanation as to what it is!) and probably fibromyalgia too as tiredness (cut work hours down from 50 per week last spring summer to 10-20 this year and still exhausted!) but said that fibromyalgia is not helpful diagnosis and will just stop me getting a job in the future! I explained that the real problems i am having are nausea and dizzyness and gastro said rheumy would help. Rheumy said thats not his job he just deals with the joint pain ive complained about! (never once complained about joint pain in last 14 months!) He then said dizzyness and palpitations could be POTS but couldnt remember all of what thats an acronym for!!! Said he would refer me for an echocardiogram (in May, still nothing yet!) but stomach not his department.

Saw Gastro again last month and he said EDS can cause stomach trouble so probably that. will refer me to specialists in london as my local healthcare doesnt have funds or knowledge to carry out further tests or help me!

So now im just so lost! I have no answers, noone seems to be able to / want to help me. Im stuck feeling awful. I work 10-20 hours a week and do nothing in evening / weekendsa as im so exhausted! and now they tell me this is a lifelong thing i need to learn to manage my energy better, sleep better (ive never slept well but before i could cope on 4 hours a night.)

ive got a new job potentially starting on the 15th August, just part time but less physical which im hoping will help but now im so scared that its all too much for me! The stress of application / interview etc has exhausted me. im a nervous wreck on top of feeling sick 24/7 anyway! Also worried that once they see my occupational health form ill be replaced anyway / future appointments will get in the way.

how do others cope with work and health balance? I would love to go back to being able to work, exercise and see friends / do fun things but i just cant see how and honestly if this is it forever id rather be dead. im 23 next month as was ill for the entirety of 22, plans to travel all cancelled and my saving are depleting to make up for how little i am able to earn. Rheumy told me i need to get stronger to support joints and then theres no reason i cant go back to my old life ans theres nothing wrong with me! But i get so light headed when i just get hot and have to bend down at work to pick something up!

I don't really know what im asking / looking for im just so tired, angry, frustrated, sad and confused by how my life has been turned upside down and im supposed to just accept it and carry on as if im fine. i don't know what to do.

14 Replies

  • Hi Nero

    Hang in there.

    Sadly, the rough journey you have had to diagnosis is all too common. And then too, after diagnosis, precious little help occurs because there seems to be a great difficulty for the health professionals to manage a multi-systemic situation.

    As you have found, consultants manage a single area rather than the whole diagnosis.

    In terms of management, we have found that planning rest breaks and having a quiet day after a "big" day helps. For us though, the unpredictable nature of symptoms does pose problems. (My son is the one diagnosed)

    Hopefully, part time work will help. At least you have a chance if you are having a bad day to not overdo it. In general, we have one day rest planned after any day of outing and absolutely nothing in the evening on weekdays

    In terms of the stomach, we have found that a gastroparesis diet can help ease the amount of vomiting. However, in all honesty, not much helps during an episode except keeping hydrated and trying to eat "gentle" food. Supplement drinks provide one avenue for high calorie and low volume - but still drink slowly!

    In general, as much as it is a pain, you do end up curtailing your activity a lot more than many others. It is a matter of finding your own balance but slowly is the key. If you exercise, start slow and keep it on a slow increase. If you go out with friends, plan a rest day immediately after.

    These are not "answers" but how we have learned to reduce the number of "crash days".

    Most of all - be kind to yourself and keep reaching out. You are absolutely not alone!

    Best wishes

  • Hello Nero


    Faolan's reply is so brilliant there is nothing I can add

    My version of this is fairly representational, except I have infant onset lupus + an early onset Prinary Immunodeficiency. But at 63, am feeling better than I have since my 20s thanks mainly to a typical collection of multisystem clincs helping me by monitoring & managing my primary conditions + my many diagnosed secondaries

    You've never had things easy, and now you've been through an extra rough passage. The important thing is that you're beginning to understand more about the causes underlying everything. Knowledge is power & there are wonderful support organisations with regional groups + online forums...because EDS is unusual, you'll probably become more expert than many of your medics. This is the beginning of a new, more empowered life...yes, living with all this is tough, but your confidence will grow with understanding

    Am glad you're here...and have you visited the healthunlocked community named STARS? It covers PoTS...and the STARS website is full of good info etc


    🍀🍀🍀🍀 coco

  • Hi,

    all my sympathies for having to deal with such uninformed and unhelpful doctors/consultants.

    EDS all by itself can cause all of this - all the pain, all the fatigue, the POTS, the gastro stuff etc...

    You can ask for a tilt-table test to confirm POTS, which is a problem to deal with in itself.

    I personally could not manage work and started reducing hours from the age of 29 until giving up work entirely aged 48 - perhaps if I'd had a different job I would have been able to manage it, and perhaps if I'd had a diagnosis before the age of 47! However, I do know of many others who have successfully continued with a career.

    One thing that I found helpful is just to throw myself into getting as well as I can do. Cardio is not helpful - just causes joint pain/strain. - my physio said that EDS ers need stronger muscles than average people to help mitigate many of the symptoms. I was told to do pilates, but opted for strength training instead which restores condition to your muscles and will help with everything. You may need to choose to prioritise either work or your health at different times - have you had a referral to a physio? You should have - they will explain that you need to manage your energy levels - you are simply not the same as others and you do not have the same energy levels - you cannot just magic up some extra energy at will, like they can.

    Look up the 'spoons theory' online, join a couple of EDS support groups. This condition will, to an extent, define your future, but by getting all the help you need now you can armour up to deal with it for the rest of your life.

    Look at the website 'edhs'. You will need to become your own health expert - you will need to become your own advocate.

    Best of luck!

  • Thanks,

    My gastro suggested tilt table but there isn't a hospital in my area with the equipment so I have to wait for a referral to see eds specialist in London first.

    The rheumatologist I saw said he would refer me to a physio and for echocardiogram but that was in may and I haven't heard anything yet. Can't get through to his secretary either!

    I used to do weight training, kettle bells, free weights but stopped as dr initially thought I had an ulcer and was worried it would rupture and now I struggle to do anything vigorous as I get so dizzy and light headed hen hot.

    I'm sure I can work it out eventually. Some days I'm up for the challenge and then I ha e days (like today..) where I just want to give up.

  • Hello Nero,

    Wait it out for the referrals, but put everything that you want on a list and make sure your GP is aware of it, and is aware that you'd expect it to happen this year. Push for a physio referral tomorrow - there are lots of them, but of very varying usefulness. You will know if you get a useful one. But you can always get another if you don't like the first ( I had five). As for ECGs - as others have said they have limited uses. You have to be suffering a cardiac event or a major malfunction usually for anything to show. Ask for a check on your mitral valve - see how that goes.

    If you used to do weight training (which is generally too demanding for folks with POTS), you should still be well conditioned from that, so switch to strength training (nothing too vigorous so not free weights) - aimed at keeping your muscles conditioned.

    Honestly, of all the many, many stupid things I have done in the last twenty years; allowing my muscles to become deconditioned ( due to pain) is in the top 5 most regrettable things, and there are some fairly major life events up there.

    The thing about EDS is that there is no point and no merit in fighting it - I have been a community/church/school leader (and still am, to a lesser extent) for a fair while, but you must place your health first.

  • Jay66 is bang on . You probably do have HEDS. Try to look for a rheumy who specialises in EDS to diagnose you . Research, research, research and be your own advocate. By the way I was diagnosed at Manchester Royal Infirmary by Dr Pauline Ho .... the woman is a genius!!. If that is not your geographical area, then google her and call her secretary and ask can she recommend someone in your area. Need a lie down now !!

  • Thank you. My gastro and gp have both written to 2 hospitals in London who have specialist researchers they think can help. But I will definitely contact her and see who she reccomend (going to see gp soon so will ask about who I've been referred to)

    I am hopefully starting a new part time less physical job this month so fingers crossed I can get through the stressful stages and figure this out.

  • Good luck. I'm not sure which London specialists you're seeing but the ones I saw were brilliant. The local nhs doctors were dismissive and patronising. At my worst I struggled to sit up due to the dizziness and palpitations and lost a lot of weight as i struggled to eat or take fluids as I was so nauseous but this all rapidly improved with treatment for POTS. The gastro specialist also put me on a low FODMAP diet with some vitamin and probiotic supplements which really helped. I'm now functioning really well considering. Don't loose hope. Once you get the right help you can feel so much better.

  • Hiya Nero13,

    In case your docs don't know already, the absolute bee's knees (and spider's ankles!) for EDSers with gastro issues is Professor Qasim Aziz at Barts Hospital London. (Last time I looked he was heading the Wingate Institute there.)

    He is a neurogastroenterologist, and he not only knows about everything gastro but also POTS and EDS. In fact, he will only take patients with one of these or related conditions. He can diagnose EDS.

    I have EDS III and POTS, and had so so many problems with guts, gastroparesis, borderline slow transit, lots of structural damage to gut causing pseudo-obstructions, and a lot more. He sorted me out.

    He is the one who has done so much research on EDS, POTS and the gut. If you are suffering with POTS, he can help or recommend your doctor refers you to the Autonomic Unit (at the National Hospital for Neurology & Neurosurgery).

    **Actually, it sounds like what you need is to be referred to the Hypermobility Clinic at University College Hospital London. I saw Dr. Kazkaz there and she got my GP to refer me to Prof Aziz mentioned above, and to Prof Mathias' team (the Autonomic Unit) for the POTS. Those are the gold standard.**

    The EDS/JHS diagnosis is the gateway.

    You can ask your rheumatologist to refer to the Hypermoblilty Clinic (it has to be a rheumatologist who refers you), and if/when you do, first get the clinic's proper address from the HMSA (Hypermobility Syndromes Association) website, as it is easy to miss on the Choose and Book website, and bring it to the consultation.

    And once you have the diagnosis, you can get yourself referred to RNOH Stanmore for their Hypermobility syndromes rehabilitation clinic which is to help you keep functioning, keep well and cope well. (The doctor to refer to there is Dr. Helen Cohen, another of the doctors who really knows EDS /JHS).

    It all takes time, which is just as well as it is all a lot to take in. But it is well worth it. You will feel so much better.

  • Brilliant, thank you! I'm seeing another rheumatologist next week so will mention it as my last one said only gp could refer.... He was useless!

  • Thanks for you reply N, it is so good to know you are seeing someone who might refer.

    When you see him bring the clinic addresses you need, (Hypermobility Clinic and Prof Aziz), they should be on HMSA website &/EDS UK.

    You might find some interesting articles on those sites which would help you and maybe inform the rheumatologist. Dr. Alan Hakim, Prof. Aziz and Prof. Rodney Graham (who started to Hypermobility Clinic at UCLH) have all written brilliant articles you can read and print out. They might show the rheumy the connection between the neuro (POTS) and neurogastro and EDS. I know it's a delicate balance with consultants, but they might take a useful article away and read it, which could help your case.

    I think the point could be made that since they have wasted a lot of funds so far and got nothing, by referring you to the right people now they will save in the long run.

    Medicine being partly a social science, it is always worth dwelling on how it is making it hard for you to continue working (as it is part of their remit to keep you in work apparently).

  • And lastly, it does sound like a lot of the symptoms you are struggling with are POTS.

    in case you would like a quick idea of why it affects you, and ways that might help you manage now:

    **Firstly, I am assuming you have the type of POTS that people get with EDS. (You can only really know that after tests at the Autonomic Unit).**

    Here goes...

    Bendy stretchy tissues, rheumatologist forget, can include bowel, veins, everything!

    The type of POTS we're talking about is the autonomic nervous system's overreaction to low blood pressure.

    (You probably know this, but for newbies, the autonomic nervous system handles all the thing your body does automatically, such as breathing, blood pressure, heart rate...)

    With bendy stretchy EDS veins the blood is not pushed up efficiently, so when you're standing or sitting blood pools in the feet and lower body.

    So pressure receptors in the neck note the lowered blood pressure and tell the heart to pump faster to keep the blood going to brain and heart.

    The heart pumps faster, but then the panic is on again because now your core is overheating!

    So your body pushes the heat out to the skin to keep your temperature stable. (This is why you get hot and flush).

    With the blood going to the periphery to cool you down, the original purpose of getting your blood pressure up has been lost!

    So if you stay upright for too long at this stage, the body makes you faint, the brutal but effective method of using gravity to restore adequate blood supply to your brain.

    (Usually by this stage you have avoided fainting by sitting/lying down/getting your feet up because you feel so dizzy).

    So, what to do?

    See if this helps:

    **Unless you have been told you have high blood pressure (unlikely with your symptoms but I'm not a doctor),**, try this:

    Drink water throughout the day, 2.5 litres. Remember tea or alcohol will dehydrate you so if you drink either, drink more water. (Water increasing your blood volume fools your body into thinking your blood pressure is higher than it is).

    Eat more salt. It helps you retain the water.

    6 small meals a day recommended, as for many, a heavy meal will lower blood pressure further.

    Everything you can do sitting down, do sitting down. Even better, feet up!

    Heat makes veins laxer. So avoid heat.

    Sit to shower, you'll feel tons better.

    If you have to stand long, pump your calves, clench buttocks &/ hands, move your feet, 'fidget'.

    Every opportunity, feet up. (An extra chair under your desk to put feet up discreetly?)

    Avoid stress (hah! So easy, right?)

    Avoid sudden changes in temperature, so wear a few light layers, merino wool, viscose, silk... Easier to manage your temperature this way.

    I learnt all the above at the Autonomic Unit where I was tested, diagnosed and taught how to deal with it.

    Give yourself time to rest when you arrive at eg Physio appointments, to get your BP stable after the temperature changes and stresses. (Physio who knows POTS told me this).

    (If you've got this type of POTS, you've probably been harsh on yourself all your life not realising you don't have to feel like this, so it's good to know).

    Some people find small amounts of coffee through earlier part of the day helps them focus. I'm one of those people. Doesn't suit everybody.

    If you can, nap. Less adrenalin produced to keep you awake, makes it easier to sleep at night. Either 20 minutes shut-eye (helps you feel better), or 1.5 hours sleep (helps you perform better). No long naps after 3. ("Chance would be a fine thing" I hear you say?) Even just little 5-minute veg-outs help keep the stress down... Or a few 10 to 20 mins lie-downs to lengthen and hydrate spine and relax.

    Another thing I thought you might like to know is, if you sometimes feel you are in an earthquake, or feel extreme shock and panic. YOU ARE NOT GOING CRAZY, they are just POTS symptoms.

    Exercise should be gentle and graded. (On tests they found exercise lowers my BP and I'm not the only one). Suggested are swimming and Pilates.

    Well I don't mean to overwhelm you with detail, but I do hope this will give you a handle on your symptoms until you get the referrals you need.

    Best wishes from Boombiddy.

    Ps I was referred to all the clinics I've told you about, but haven't done the course at Stanmore yet. Those who have tell me it's excellent, and they help you get fitter and understand POTS.

  • Wow! Thank you so Much! That is a much better explanation to exactly what POTS Is! I find my symptoms, so are very temperature based eg I get dizzy when I'm hot so summer has been bit awful but also when being active.

    I have just changed jobs which has been stressful but is less physical so I think in the long run will help! I'm actually now working in a hospital where my original rheumatologist does a clinic.. haha

    I notice often I feel the sensation of waking up from a dream whee you're falling but when I'm awake! My gp seemed to understand what I mentioned but not rheumatology!

    When I was younger I had fitts caused by high temperature and my mum is now wondering if that is connected to what's going on now (when it's hot I'm too hot but spent last winter in 10 layers under a blanketmjnable tobget warm!)

    On the plus side I am finding all the medical knowledge I'm acquiring fascinating. At this rate I think I will have better idea than the doctors (so far I've been misdiagnosed with stomach ulcer, gall stones, leukemia, brain tumor... it's been a bit of an insane yer and a Half! )

    Thanks again, I really appreciate the time and effort you've put into your posts!

  • Wow N, you have really been through it.

    I recognise the multiple misdiagnoses, been there. But suspected brain tumour, leukaemia? Yikes! The whole experience must have been so distressing!

    Temperature regulation is a big issue for everyone who has POTS, you sound pretty classic.

    The falling feeling does sound very POTS. You can feel your blood pressure going, it's really hard to explain to someone who doesn't have it.

    You might find better hydration and salt help a little with the 'sinking feelings'.

    Personally, I think the disorientation of POTS is added to by the poorer proprioception we tend to have with EDS. Your brain, eyes and muscles work together to tell you where you are in space, so with the day-to-day variation in laxity, your muscles are giving inconsistent feedback to the brain, so your sense of position is affected. For instance, I go to pick something up and miss by 3 inches, texting is frustrating, I walk into door frames (or they walk into me, you never can tell...) Add to that a blood pressure swoop and you've got mayhem!

    BTW, the emotions and the POTS use the same systems of the body so it's understandable to get them confused. When you have POTS you may feel panicky. Quick rule of thumb: If it's relieved by getting your feet up, it's POTS.

    A practical tip:

    There is a thing called the Pressor Effect, someone on the neurology team told me about it. Basically, it is that when you drink about 500 ml water down fast, it brings your blood pressure up. (Nobody knows how it works yet, cos obviously it takes longer for the water to reach your bloodstream than it does for it to take effect). Anyway it may come in useful when you're in a jam.

    Do you actually taste salt?

    I know when I really need it cos i can't taste it.

    Now I am on fludrocortisone I need less salt as the fludrocortisone helps the body retain water.

    If/when you see the Autonomic Unit they may suggest meds once you've tried all the natural methods.

    BY THE WAY, the Autonomic Unit are the only people who do the whole battery of tests for PoTS, so insist.

    Anyway, hope that isn't information overload, that's what you don't want!