Unrelenting malaise

[Castorp]

Hello! This is my first post. I have been ill for 1.5 year  and finally diagnosed with POTS-dysautonomia.
Neverthelss, I feel like something is still being missed. I have tachycardia when standing and problems of temperature regulation (chills and hot flashes, although the temperature is usually below 37ºC). However, the worst symptom I have is a non-stop profound malaise 24/7. I have experienced this unrelenting malaise since the beginning of my illness in March 2020, even while resting and my heart rate and blood pressure are okay. The feeling is similar to the malaise caused by the flu and  is often unbearable.
I am really desperate and I wonder if this daily malaise is actually a dysautonomia symptom. Does anyone else experience a similar feeling?

Thank you for your help.

[cmep37]

Yes, when I first had to finally admit defeat and give up work due to my POTS symptoms I had malaise like you describe for about 3 years.  I had been struggling for about 18 months with what I now know was moderate POTS, then one day at work I fainted after having to stand in a meeting for 30mins and after that it was just like something in my brain had broken - I could no longer stand for more than a couple of minutes without fainting or feeling very like it!  I constantly felt weak and just really unwell - it's very hard to explain to doctors, you just feel like you have no energy at all.  I (nor any of my doctors) had heard of POTS so I was diagnosed with ME/CFS - I'm honestly not sure whether I ever had ME or whether my problems were just POTS and hEDS.  It did gradually wear away.  One thing that seemed to help was the drug Modafinil - it gave me enough energy to start regular exercises from bed which presumably helped with my POTS symptoms which would suggest the malaise was caused by dysautonomia.

I still get malaise during a flare (I've had it for the last couple of months actually) although never to the same extent as when I first collapsed - nowadays I am able to force myself to get up and dressed whereas during that first 3 years a million pounds could not have persuaded me!

Is your POTS well managed?  Has anyone ever suggested ME/CFS as a possible cause of your malaise?

[Castorp]

@cmep37 thank you very much for your reply. ME/CFS was considered as a potential diagnosis by my doctors, but I do not fulfil the criteria. In particular, I do not have PEM, which seems to be the main symptom of ME/CFS. After testing positive for various adrenergic antibodies, I was finally diagnosed with autoimmune POTS. My doctors have attempted different treatments (IVIG, plasmapheresis), but nothing has worked for me and I continue to suffer daily this horrible malaise.

 

 

[POTSius]

I can relate and have found ibuprofen to help enormously

[MikeO]

so what is the definition of malaise? not feeling well?

[Pistol]

@Castorp - yes, malaise, fatigue, exhaustion ... all part of POTS/dysautonomia. I used to ( similar to @cmep37 ) be so exhausted that I could barely get out of bed. Over the years getting my BP/ HR under control ( and stopping to faint or take seizures ) as well as starting a SSRI and Ritalin have helped enormously. I also have been able to be more active and therefore improve my POTS symptoms once the right medication combo was found. SSRI/SNRI can be a very helpful med in POTS, since it helps to adjust the neurotransmitters ( especially serotonin ) that control a part of the ANS. In addition ot meds what helped me is increasing salt and fluid intake and a very slowly increased regimen of adequate rest and exercise. Althoug I have to say that exercise was not possible for me to do while being so extremely fatigued! 

[Castorp]

It is difficult to describe this generalized malaise. It is not simply not feeling well. I try to describe it to my doctors as feeling like I have a severe flu every single day during the last 18 months (although without respiratory symptoms). There is also a feeling of fever, yet normal values appear on the thermometer. It is really incapacitating and never goes away.  I have attempted numerous treatments, but nobody seems to know what to do to reduce this terrible malaise.

[MikeO]

I do not know what Medications you are taking but, have you or your Doctor considered a possible side effect?

[Castorp]

@MikeO thank you for your suggestion. I have had this generalized malaise every single day since the beginning of my illness, 18 months ago. During this period, I have taken different medications, without any effect on the malaise.  For this reason,  I do not think that this is related to a possible side effect.

[cmep37]

19 hours ago, Castorp said:

ME/CFS was considered as a potential diagnosis by my doctors, but I do not fulfil the criteria. In particular, I do not have PEM, which seems to be the main symptom of ME/CFS.

Strictly speaking neither did I but my doctors didn't know what else to diagnose me with!  My malaise was constant - it did worsen when I did things but was never relieved, even when I woke up in the middle of the night I had it.

 

2 hours ago, Castorp said:

It is difficult to describe this generalized malaise.

 I agree - I have tried but that feeling of weakness, fatigue, just awful sense of unwellness is almost impossible to describe - the flu but not the flu is as close as it gets! 

 

20 hours ago, Castorp said:

My doctors have attempted different treatments (IVIG, plasmapheresis), but nothing has worked for me

I understand your doctors have attempted to treat the underlying condition that is causing POTS but have they prescribed anything for the POTS symptoms themselves?  I am like you - I have secondary POTS caused in my case by hEDS.   There is nothing they can do for my faulty collagen that means my veins are super stretchy but my doctors still tried to lower my HR by prescribing fludrocortisone, Midodrine, beta-blockers (low dose propranolol) and ivabradine.  None of them worked in my case so I am just managing with increased fluids, salt, compression tights and as much exercise as I can manage.  If you haven't tried some of these measures it would be worth seeing a EP cardiologist to get his input - I can't help wondering if your malaise would lessen if your dysautonomia symptoms improved.

[MikeO]

5 minutes ago, cmep37 said:

I agree - I have tried but that feeling of weakness, fatigue, just awful sense of unwellness is almost impossible to describe

I have struggled with this as well with my DR's. usually they would start trying to push anti-depressants. I have gained some ground since being treated at the faint and fall clinic i am at now. My GP does get what a NS dysfunction is he just has no idea how to treat or recognize it. Some of the nurses i see also get it and will give you some hope that you will have some good day's.

[cmep37]

1 minute ago, MikeO said:

usually they would start trying to push anti-depressants.

Oh yes - every time I mentioned it they would say - I know what will help, have you tried an SSRI/SNRI?  Each doctor had their own favourite - I think I have tried at least 6 different types/brands from escitalolpram to venlafaxine to fluoxetine, none of which made one iota of difference to how I felt!  Having said that I do know some people with dysautonomia who did get benefit from them - they seemed to help their sleep patterns which in turn reduced fatigue.

[MikeO]

2 minutes ago, cmep37 said:

have you tried an SSRI/SNRI? 

No i have not. The Mestinton i am now taking does help with fatigue and some of the weakness but not the general ill feeling and if i miss a dose i do feel it so i know it is working. I also heard it helps with REM sleep if you take it before bed but i have not tried this yet. 

[Castorp]

58 minutes ago, cmep37 said:

I understand your doctors have attempted to treat the underlying condition that is causing POTS but have they prescribed anything for the POTS symptoms themselves?  I am like you - I have secondary POTS caused in my case by hEDS.   There is nothing they can do for my faulty collagen that means my veins are super stretchy but my doctors still tried to lower my HR by prescribing fludrocortisone, Midodrine, beta-blockers (low dose propranolol) and ivabradine.  None of them worked in my case so I am just managing with increased fluids, salt, compression tights and as much exercise as I can manage.  If you haven't tried some of these measures it would be worth seeing a EP cardiologist to get his input - I can't help wondering if your malaise would lessen if your dysautonomia symptoms improved.

Thank you again for your interest @cmep37. My doctors have also attempted to treat the POTS symptoms with different medications (beta-blockers such as propanolol or bisoprolol, ivabradine, antidepressants, LDN). The beta-blockers and ivabradine  help to reduce my heart rate and the intensity of tachycardia when standing. However, they have no effect on the unrelenting malaise. I have not used so far midodrine or fludocortisone because my blood pressure is not particularly low (in fact, when standing I tend to have  dyastolic hypertension).

[cmep37]

2 hours ago, Castorp said:

My doctors have also attempted to treat the POTS symptoms with different medications (beta-blockers such as propanolol or bisoprolol, ivabradine, antidepressants, LDN). The beta-blockers and ivabradine  help to reduce my heart rate and the intensity of tachycardia when standing. However, they have no effect on the unrelenting malaise. I have not used so far midodrine or fludocortisone because my blood pressure is not particularly low (in fact, when standing I tend to have  dyastolic hypertension).

Yep, you've tried everything I was suggesting - I thought it was worth asking just in case!  Given your diastolic BP rises when standing (as I have recently learned from @Pistol") have your doctors considered hyper-POTS? Clonidine or another alpha antagonist might be worth trying in this case.

Of course it may be that the malaise is actually coming from the same underlying auto-immune condition that is causing your POTS rather than dysautonomia - this is the problem with having more than one health issue - you are never really sure what condition is causing what issue!

[Pistol]

3 hours ago, cmep37 said:

Of course it may be that the malaise is actually coming from the same underlying auto-immune condition that is causing your POTS rather than dysautonomia

Despite getting HR and bp somewhat under control I continued to struggle with fatigue and low energy, coming in bursts. Also my joints kept hurting. Eventually ( after seeing a rheumatologist twice ) my autonomic specialist, who is involved in researching auto-inflammatory origins of certain POTS types, recommended Hydroxychloroquine ( Plaquenil ). Since starting it at the beginning of this year my pains and ( most importantly ) the fatigue and low energy have significantly improved! I even have been able to decrease several of my HR and BP meds since starting it! Being able to be more active b/c the fatigue and pain are gone seems to help with the POTS. IMO this is a clear sign that in my case ( I have HPOTS and NCS ) the auto-inflammatory theory applies!

[Castorp]

@cmep37 and @Pistol, thank you for your comments and suggestions. I will discuss them with my doctor in the next appointment.