Getting worse - advice/suggestions please?

Hello again,

Desperation at my increasing fatigue and weakness prompts me to post once again, I'm afraid. ANY thoughts would be welcome.

The daily pattern is:

Wake feeling nauseous and very tired, often shaking uncontrollably. Sometimes hot flush with this. Drink some water and, when able, get up.

Morning is easier, and am able to potter about, make tea etc. But more than 2 minutes standing gives me palpitations (which leads to hot flushes, nausea and shaking)

After lunch, become very tired. Often doze off in chair. As PM goes on, fatigue intensifies, often turning into hot flush, with shaking. This persists until around 7pm.

Between 7 and 10, symptoms ease. Bath and bed - sometimes this is fine, sometimes, flush and shaking returns later.

Overnight, wake at 2.30-3.30am, doze briefly after this. Total sleep = 4 1/2 hours per night. Repeat next day.

Blood sugar levels throughout the day seem normal, BP 105/75 on waking, rising to 130/90 during day. Resting heartrate 90-100.

Meds= hydroxy, 6mg pred, ranitidine, beta blocker 1.25mg bisoprolol.

This pattern has been getting progressively worse since the beginning of September - more intense fatigue, poorer exercise tolerance. I now spend virtually my whole time sat in a chair. A trip to the shop in the car is a major undertaking.

Here's the thing; none of my medics have suggested any possible cause or treatment. Resp consultant says he is happy that my lung disease has improved, rheumy says he doesn't think the symptoms are related to auto-immunity or drugs, cardiologist says he doesn't think they are heart related. No infection has turned up, despite repeated tests. At my suggestion, GP has requested assessment for POTS (but cardiologist says he doesn't think it's that either), T3 levels (for thyroid - but TSH and T4 levels are OK) and switched me from lansoproazole to raniditine in case magnesium deficiency is a cause.

My symptoms are having a massive impact on my daily life and are worsening. But everyone seems content to let things drift.

Does anyone recognise these symptoms? What are your thoughts on what I should do next?

Ta x

26 Replies

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  • Hey Mike, So sorry to hear your in a bad place right now. it sounds as though the daily grind of just trying to get to a state of equilibrium is taking its toll. Give yourself space for your fears as well as your positive thoughts, it must be scarey to not know what your body is doing but for sure it will be trying to heal itself. Kimx

  • Thanks Kimnjay, as you say, its the relentlessness of it that is wearing, with no days off! It always helps to have an understanding listener here. Hope things are OK at your end x

  • Hello mike

    Read your post an hour ago...and went out for a walk in the wood to think it over

    Clearly your consultants have given your case due attention. But that doesn't mean another consultant can't contirbute the sort of πŸ’‘insight that can at least help you better understand why you're experiencing all this...and hopefully help you minimise this stuff. Yes, Kim's point is v important...although my impression is that you are a positive & philosophic kind of guy who knows how to manage the anxiety & depression we all inevitably feel due to the strains & stresses of this life we lead

    Knowledge is power. You seek knowledge. I'm in a somewhat similar place re my abdo/Pelvic stuff...63 years into understanding it...getting closer thanks to the severity of the past 13 months' flare...with the help of my WHS PHYSIO, urology & gyn onc consultants, my GP and now, hopefully, gastroenterology πŸ˜‰

    My lingering suspicion this is that this is something to do with dysautonomia. I forget: are you hypermobile? Rheumatology & cardiology could've mentioned if you are. But maybe they haven't bothered. A good physio should be able to diagnosis this. Dysautonomia can come alongside immune dysfunction, and my impression is that it's even more common with some forms of hypermobility (leg my vascular ehlers danlos). Just cause cardiology thinks this isn't the POTS type of autonomic dysfunction doesn't mean these signs & symptoms can't be related to another form of dysautonomia

    My other question is: what are your immunology bloods like? Have your immunoglobulins been checked: G,A,M? If you're not prone to infection, a Primary Immunodeficiency due to hypogammaglobulinaemia is less likely. But I wonder...

    Also, are you loosing weight?

    So, whether this is or isn't related to dysautonomia, an immunodeficiency or whatever, i guess this could be another happy (😏) opportunity for a chat with your GP...and some sort of second opinion. Many of us here have taken this journey. I've headed down this road several times over the decades eg re my spine condition, my CRPS, my DES daughter monitoring etc etc. It's been a lot of hard work, and meant breaking into my piggybank. But now, thanks to this wonderful forum, I feel better equipped to make the NHS actually go to work on my behalf. I suspect you're more effective at this than me.

    Wish I could help more...am sure others will offer more insight than I can manage

    Take care buddy

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thanks coco, as usual, for your thoughtful and knowledgeable reply. As you say, I'm well practiced at handling anxiety, and quite accepting that there are times when one just has to live with uncertainty.

    What drives me to post is the combination of increasing disability/distress and having no medic who seems willing to take responsibility for sorting it out. Everything recently - the POTS referral, additional bloods, B blockers, PPI switch - is the result of me doing research on my own and insisting on action. But unless they are dealing face-to-face, it seems that all the clinicians are only too willing to pass the buck. The cardiologist is annoying me particularly atm, as his letter in response to the POTS referral contains a misrepresentation of our previous consultations which is then used as justification for not seeing me promptly.

    I think you may be right about the dysautonomia. I am hypermobile. I'm losing muscle mass, but not fat! But I don't have all my blood results, including the immunoglobulin levels.

    So I have a plan for tomorrow (if I can get out of bed!!).

    Thanks again for your thoughtful response x

  • Looking forward to your updates πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ€πŸ€πŸ€πŸ€

  • I have discovered lately to my detriment that lupus blood test don't always accurately reflect what is going on with lupus disease. It seems that I have been told for a long time that my bloods for lupus is good when there was still activity that the bloods test was not picking up and no one listened to me when I said I don't feel like that my lupus is good because I still feel really awful every day. I may have further lung damage as a result of this. I am waiting for ct scan results. It seem that lupus has been gnawing at me for a long time and when meds were reduced I had a full blown flare.

    when will doctors listen to patients and stop relying on blood tests that may or may not be accurate.

  • Sorry you are going through all that ... it sounds like my symptoms when I took Pred, I could only deal with it 1 week and asked for a change (or to be shot at like a broken horse), I'm on Deflazacort now and it is not that bad for me.

    Now, I have 2 other diseases with same symptoms when they are out of control, hypohithyroidism and vasovagal syndrome. A very low TSH gives me shaking, tachycardia /palpitations and fast heartbeats, but you said your levels are Ok. Uhm. Vasovagal and POTS are very similar as I understood, noradrenaline gets elevated and hence the shaking, uneven heartrate, flushes, nausea, all that activity is similar to strenuous exercise that leaves me tired, dehydrated and potassium depleted. I hope they check you for POTS.

    Did they check your potassium levels? Do you feel weakness or leg cramps? Any bowel problems? Your heart rate seems high, those palpitations and all of the above could also be related to low potassium and or low magnesium (personal experience).

    Anyway, I am on bisoprolol 1.25mg twice a day but I have my cardiologist permission to take an extra dose if I start with the vasovagal symptoms (if I don't I faint like a damsel). I would strongly recommend you to pressure your cardio to look into dysautonomic disorders and at least to increase your beta blocker, you need to rest and your crazy heart is not helping.

    I know that sometimes is frustrating how some doctors seem to react slowly to our conditions, maybe is because they have seen worst. Responsibility falls on us to make them aware when we feel like crap and our lifestyle is being limited with new ailments that we can"t cope with. But you need to be very specific with your cardio, give him examples like "standing 2 minutes gives me palpitations, my heatrate goes to 100 and this is not usual", "riding a car for x minutes and then shop around for x time makes me feel this and that but 3 months ago it was routine for me".

    Ay, too long. I hope you feel better and get the right treatment you need.

    Sam

  • That is a very helpful reply, 1sam, thank you. I have rather lost faith in the interpretation of bloods that I have been getting - I suspect that the medics glance at the "top line" results and unless they are wildly discrepant, move on to their "thing" - the echocardiogram, or the lung scan etc. Things like the TSH are done so unsystematically (Ive had 2 TSHs in 18 months) that I doubt their reliability.

    Your story seems to fit with how I feel, especially the sense I have that my heart is under strain 24/7, despite my doing absolutely nothing. There *has* to be something going wrong with the autonomic regulation system somehow.

    I did that thing about specifying precisely my symptoms, which is how I got the urgent referral for POTS assessment. (I did a 5 minute standing test - and my heart rate went crazy). But when my GP showed me the cardiologist's reply, it said, "It is some time since I saw whisperit, but some of these issues were raised then. I don't think he has POTS and will not see him urgently. But in view of the information you have supplied, will arrange some tilt table tests and see him after that" This means a wait of at least 6 months. Since I had NONE of my current symptoms back then, this is particularly frustrating.

    Many thanks again

    Mike x

  • Your cardiologist has lovely bed side manners (as many of them LOL). 6 months is a long time ... in the meantime, maybe your GP can evaluate if your bisoprolol needs adjustment?. From my own experience, if fast heartbeat is left uncontrolled it could lead to chills and fainting. Those and chest pains need a visit to A&E and hopefully it won't be your case.

    Take care of yourself, see if lowering salt and tea intake helps (tea/caffeine, sorry). Stay hydrated, breathe deeply and lie flat if possible (no pillows) when your heart goes faster.

    Hugs.

    Samantha

  • Thanks, Samantha, that is all good advice.

    Late last night, I had a particularly prolonged and intense episode of shaking, sweats etc and, in desperation, decided to take a 2.5mg pred tablet (experience having shown that the alternative would have been going into casualty and lying untreated on a trolley until this morning anyway).

    After about 30 minutes, the symptoms passed and I had no further trouble all night - or on getting up this morning. Which is interesting....

    Anyway, I'm ringing the rheumy nurse this morning and seeing my GP on Wednesday.

    I'm all fired up (or would be if my adrenals were functioning), so expect some action!

  • You're in the UK? If you have an episode like that with chest pain call 999 and you will get an ambulance with a paramedic who will do basic obs and an ECG - often that provides either A&E (if they feel you need to be seen as an emergency) or your GP if you agree follow-up with them with direct evidence from the actual "thing". Otherwise they repeatedly only have your word for what is happening.

  • Hi whisper it

    So sorry your suffering so much with no progress being made!. I know how hard it is to drag yourself thru the days getting nowhere. It's debilitating and demoralising!.

    A couple of thoughts reading your post. I wonder if it's side effects from the beta blocker ?. They can be difficult drugs to tolerate and wonder if it could be changed specially as your heart rate is high, it's not doing its job and could just be giving you side effects!.

    You could talk to your GP about having the Tilt table tests brought forward especially as receiving the Consuktants letter it isn't a fair resume of the consultation!. It's awful when that happens and makes you very angry doesn't it?.

    I like the way you say you have a plan. Hope it goes well whatever you do. Your so right not to give up but it's hard to keep going!.

    All the best Misty.

  • Thanks misty,

    It's unlikely to be the B blocker, as I didn't say, but I have only been on it for a week, and the symptoms have gone on since late September.

    I am going to take you advice on the tilt table, though. Grrrr....!

    Hope your day goes well,

    Mikex

  • Hi whisper it

    It's worth a try as I know thru someone else on forum how similar the POTS symptoms are to Lupus ones. It can be hard to know what's doing what we can have so much. Let us know how you get on.

    Good luck Misty.

  • Ugh ugh ugh. I've had similar. I wonder have you had your iron tested? I'm regularly anaemic and I used to think anaemia was no big deal and just one of those things. But it can be quite serious, and when I get what you're describing I tend to ask for iron blood work. (Speaking of I have iron sachets waiting for me at GP).

    I know it's scary. You may be having a winter flare. If you can, cut some corners; order in shopping if possible, buy easy to cook stuff to decrease standing to cook. Take vitamins, hydrate, rest.

    I wish you rest and recuperation!

  • Thanks, Silvergilt,

    Yes, one thing I really have to do is get my blood results ALL printed out - I've had so many and lost track of what has been done and what hasn't. And then I need to sit down and work out a logical plan for vitamin and mineral intakes. Oh for the days when I didn't have to know anything! x

  • Hi there,

    I am sorry to hear that you are feeling so unwell and that you feel that your concerns are not necessarily listened to. We can provide you with the details of lupus specialists in your area if you want a second opinion. You can send me a private message or email me at fabiien@lupusuk.org.uk

  • Hi Whisperit,

    All great suggestions from everyone and I have just one thing to add as I have similar symptoms from time to time.

    I have mild Addisons, adrenal insufficiency ,and although I am on dailly Pred I also have to take oral hydrocortisone or my cortisol levels seem to plummet. It resolves if I am very careful to keep levels steady. When I am having bad apells, I wake early hours about three in the morning and have frequent sweating episodes then chills and weakness. If I don't take more hydrocortisone then I become nauseous and can hardly function with slurrd speech I am so weak. It is quite alarming.

    Once I take the hydrocortisone I feel my system recovering though I am left very tired.I also have chronic low potassium due to a kidney problem but take plenty oral extra potassium every day, so it isnt that with me.

    I had this diagnosed by an endocrinologist who did various tests. Maybe at your worst you could try some hydrocortisone rather than more Pred as pred doesn't get into your system fully for a few hours. If you dramatically improved on taking the hydrocortisone it is possible that low cortisol might be the problem, or at least one of them.

    It is so utterly frustrating for us all, as we have so many aspects of this awful condition it is so hard to find the correct help when things get desperate.

    I really sympathise massively with your fatigue as I am much the same unless I have a top up Depot Medrol injection every ten weeks along with the oral Pred. But now I am getting increasing problems with the injection with blurred vision ,so it is not the answer either.

    I do hope you find some resolution to this.

    All the best,

    Cutty

  • Thank you Cutty. Those symptoms are so familiar sounding, so maybe we have found out what is going on when the medics have been floundering!?

    I am getting confused over the sodium/potassium issue, though. According to medical sites on the web about Addison's, the typical Addison blood picture is *low* sodium and high potassium.

    But both you and Sam mention a problem with too little potassium?

    So do you also restrict your sodium intake (salt etc) or not?

    I do hope you find a solution to your blurry vision problem

    Mike x

  • Yes you are right, usually potassium is too high in Addisons but I also have suspected Sjogrens( still negative bloods!)

    They think as an off shoot of the Sjogrens I also have Renal Tubular Acidosis which causes a chronic loss of potassium over the years.I do also try to restrict salt anyway though.

    It actually had a dramatic effect on me ten years ago when I had severe coronary artery spasm and arrhythmia. I was admitted to hospital five times in three months with suspected heart attacks.

    Each time I was admitted my potassium was under 2 and incredibly it was not picked up!!!Eventually an intelligent gastro put it all together and realised the low potassium was affecting the heart. I take 5 grams of potassium every day and that keeps it at low normal, plus I have also been on atenolol for ten years which also helped the arrythmias.

    I do get frequent bladder and kidney infections which no doubt dont help the potassium loss from my kidneys which are not working efficiently enough.

    I am very drug sensitive and I think somehow the steroids are going for my eyes now. I have glaucoma and that is a warning for taking steroids, maybe the recent injection has pushed things over the edge with my eyes.

    That is what I mean for being complex, we all are so complex and a ten minute appointment with a GP is heardly going to do anything but touch the tip of the iceberg!!!!

    C x

  • Thanks, cutty, that is nice and clear. You are so right about the time it takes to sort through all these issues, and how much responsibility we have to take for making sense of all our results etc. "Learning through doing" I think they call it!!!!

    x

  • Hi whisper it

    I too have low potassium due to a bowel condition but it can occur a lot with lupus. Good source of it are bananas!. Something else to think about!. We do have to become good detectives with our bodies to work with the doctors to get the best help. I wish you luck for better health soon. Misty.

  • It sound like you may be having a flare up. I had many of these symptoms before I was diagnosed and treated for Coeliac disease + SLE. I had horrible nausea, muscle aches, fatigue, weakness, shaking, aching knees, back pain, could not walk very far or up stairs without a lot of effort and my heart pounding. I did not have hot flushes though. Even after diagnosis, I was only put on HCQ and low dose prednisone for about 2 yrs which only helped a little bit. I continued with muscle weakness/shaking/nausea/fatigue/heart pounding until finally I was put on azathioprine, but it was damaging my liver so eventually ended up on mycophenolate mofetil and doing much better as a result. I looked up my symptoms and also thought I had POTS but it seems my symptoms occur when I am in a lupus flare. I had to go off MMF briefly last year and all of these symptoms came back! Does going up on your prednisone dose help? It may be that you need some additional meds.

    Have you had a creatine kinase (CK) blood test? That can tell if you have muscle inflammation, which might explain your weakness. (Mine has always been normal even during my flare ups though). ESR might be helpful also, but for me ESR is not a good indicator of whether or not I am flaring. My doctor relies on complement (C3,C4) levels and anti-dsDNA. If your current rheumy doesn't think this is related to your autoimmune issues, you might consider getting a second opinion. Good luck.

  • Another voice of experience - that's so valuable, Bebe. And some more helpful avenues to consider - for instance, I did find that taking a pred. boost last night seemed to resolve my symptoms - but that was just a one-off trial. I will have to go through all these posts again and think about the whole picture. Lots more to think about! Thank you so much x

  • So sorry whisper. I was very tired too in the beginning of all of this diagnosis. Hot flashes, heart palpitations. 4 hours of sleep a night, itchy dry scalp. Trouble climbing stairs.

    I truly believe all our problems are gut and liver related. Need to fix those organs, and the thyroid will fix.

    T3 gets changed to T4 60% in the liver. 20% in the gut. If they are both not working right, our thyroid is a mess. Which regulates our entire body.

    Thyroid diet repair I am on is supposed to fix the gut and liver. I now sleep more than 4 hours a night. I am dreaming again (I stopped dreaming. Probably because of the 4 hours of sleep). I have more energy. But, I still have healing of my gut and liver to do. May take years through diet and supplements. I also have magnesium and potassium absorption problems. My feet cramp a lot. Especially at night. I put a magnesium liquid on my feet at night.

    My hot flashes have also subsided. I must be doing something right.

    Look for help elsewhere, if the doctors are not helping you get real answers.

    Take care!

  • Thanks Natura,

    I'm due some thyroid results tomorrow, after I insisted on having my T3 level done. Hope that progress will be made - no doubt I will be posting again to ask more about diets and so on soon. mx

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