any help or advice would be great, getting fed up

Hello Again,

I am looking for some advice/ knowledge please. 

For about 3 months now I have been feeling bad, I am extremely tired, lacking energy and motivation to do anything, and I have had almost constant headaches throughout this time aswell. 

 

More recently a few weeks ago, my legs began to ache and really hurt. This pain gets worse when I move around, and nothing seems to be helping the aching and pain. 

I feel weak and tired all of them time, get random hot flushes in my face and especially my ears ( they go bright red and hot!) and my legs are constantly acheing. 

I have gone to the GP but they have just told me it's anxiety, and I have also spoken to the cardiology department at my hospital but they have said that it is something to speak to the gp about. 

I was wondering if anyone has some thoughts on this please? I feel really hopeless in myself and don't know what to do, I am getting bored and upset of constantly fighting my eyes to stay open, and having pains in my chest, legs and head. 

 

Thank you so much,

Hayden


13 Comments

Could this be due to continuing grief for the loss of your dear mother?

by Gemita - 2023-03-17 09:06:32

Dear Hayden, the loss of your mother has been so difficult for you and I can quite understand where many of your symptoms might be coming from.  That is not to say that your symptoms do not point to a physical illness as well, since grief can trigger many illnesses and affect our hearts too.  A broken heart is indeed difficult to mend and is a serious condition which may need treating both physically and emotionally.

During my mother’s final years when she needed ventilator support, I felt helpless.  After she recovered and then went on to develop septicaemia due to ateriosclerosis which resulted in her right leg having to be amputated, I became very ill from all the stress and was eventually diagnosed with Chronic Fatigue Syndrome.  I was pleased I had a diagnosis and could start to address some of my difficulties through talking therapy (cognitive behavioural therapy).  Working face to face with a one to one therapist was so helpful Hayden.  Even today, when I become stressed, my acute fatigue symptoms return and I know I need “to find a way to let go and get plenty of rest” - not always so easy.

I wonder if your GP might consider sending you to see a therapist (if this has not already been recommended).  I believe grief is part of the problem Hayden, since you have spent months trying to find a cure for your mother’s illness and it has taken a very heavy toll on your health.

As always Hayden I send my best wishes to you and I am always here if you need to chat.

Feeling down

by Dixie Chick 65 - 2023-03-17 09:42:50

So sorry you're continuing to go through this ! I wholeheartedly agree with Gemita's wise words. Someone to talk with would surely help you. I'd also add my advice for what it's worth..Even with your fatigue, aches and pains, if you could find something to involve yourself with, I believe it would help. Some group or activity where you live would be a start. I realize that you don't really " feel" like doing anything. This makes it really hard to try and get out. Perhaps you have tried this already ? What are your interests ? Start there and see what's out there.
 Sometime you have to get your mind ( and your body !) into another place to break out of the cycle you're in. 
I wish I had more to offer. Prayers to you for peace and comfort !

 

 

Chronic fatigue

by Lavender - 2023-03-17 10:08:12

Hayden,

I am sorry to read that your fatigue and depression have continued. I think it's in the normal length of time for mourning. You started mourning long before your mom died. You're young and vulnerable. 

It is good that you're seeking help from your cardiologist and gp, have they referred you for grief counseling?

 You could try some self helps meanwhile:

yoga

meditation

prayer

You can get better. It won't always be this way. The future has wonderful experiences in store for you. Please go on youtube and type in "Michael Sealey". You will see a list of meditation topics. He talks you through them. I lie down and get comfortable and use headphones. Listen to his voice. Relax. Just focus on what he says. It will help you to do this daily. He has topics on anxiety, ibs, negative thinking, and many others. You can copy and paste this one as an example. Some are longer than others:

https://m.youtube.com/watch?v=5LO5oAic4BE

May our father, God, who made you and loves you remind you that you are not alone. You are loved. The spirits of your mom and grandfather are closeby. You can move on. You do not have to be frozen in time. You are free to be uplifted and strong. You are worthy of love. May your strength be renewed. May new excitement enter your life. May peace reign in your world. May you feel Jesus walking alongside you with his arm on your shoulder to guide you. 
 

Breathe. 

Stress and Fatigue

by SeenBetterDays - 2023-03-17 13:20:27

Hi Hayden, so sorry that you have been through such a lot and now have to face physical challenges as well.  I am currently suffering from long term fatigue and can really empathise with how you feel.  It can be so frustrating when you have physical symptoms and are told by doctors that it is anxiety related.  The reality is that prolonged periods of stress can have physical effects on the body so it could be that the root of your problems lies in emotional trauma but is now manifesting itself in real physical symptoms.  For example, levels of cortisol in the body can have a direct effect on our ability to function effectively and maintain energy levels.  I know that you have spoken about seeing your GP and cardiology team but have they done any blood tests to exclude any physical cause for your symptoms? Also, have you had a recent echo to check your ejection fraction and heart function? If there is nothing obvious coming through as a result of testing, try to focus on activities which you find calming.  Is there music you really enjoy, are you able to get outside and walk in a local park or are there friends you could spend time with even just for a short chat if you're feeling exhausted.  The only way I find to deal with my fatigue is to do a little phone meditation each morning, make sure I get outside, preferably in some green space and to take things one day at a time.  It's easy to feel impatience and frustration when your body doesn't respond in the way you would hope but I sometimes think that it can take a long time for the body to heal from emotional and physical stress. It will come back into balance, it just needs tlc and self kindness.  Are you eating, drinking and sleeping well? Sounds simple but often not so easy to achieve, especially when the tiredness kicks in.  I really hope you feel better soon and remember you always have people here to talk to or ask questions if it gets too much. Thinking of you, you are stronger than you think.

thank you so much, some lovely words and great help

by PacerPrice - 2023-03-17 14:23:34

Thank you all,

all of your messages have really helped, it is nice to know that I am not alone in this. and i'm sure all of your experiences have made you the strong people you are. I belive the emotional stress is taking a big toll on me, but it is the constant worry that there is something physical going on that makes me anxious. 

I have had blood tests but no heart tests. I haven't had an echo since june last year and I am terrified that my ejection fraction will be low, but would there be more physical symptoms of that? like swelling and shortness of breath? I really hope it not heart related but at the same time I don't know how to find out if it is, no one seems concerned enough to test me. 

Thank you all,

Hayden x

Separating physical from mental issues

by Penguin - 2023-03-17 17:01:57

Hi Haydn,

I remember answering a previous post of yours on a similar theme and thinking at the time that this could be caused by mental distress and a very sad and difficult situation that you have to deal with.

I hope I didn't do you a disservice when I answered you before, by coming to this conclusion? I know only too well how it feels to be dismissed and for genuine physical symptoms to be ignored.  It feels unjust and it's difficult to be heard as all too often the mental overshadows the physical and this isn't always helpful. A full and proper assessment and attuned active  listening skills are far more beneficial than leaving a patient feeling dismissed and invalidated and that sadly seems to be how you currently feel if I read correctly? 

Perhaps keep a diary of the symptoms which you feel are due to your cardiac condition and see if you can find some patterns or reasons which explain why they occur each time e.g. exercise, breathlessness, stress induced cardiac rhythm disturbance / palpitations etc. 

This may make the symptoms easier to discuss with your doctor. Sometimes anxiety is too convenient an excuse and sometimes it explains more than we expect.  You are best qualified to know your own mind and body. 

Take care x  

Ask

by Lavender - 2023-03-17 18:58:09

Directly ask your cardiologist to do an echocardiogram if you want one. 
 

I would go back to the GP

by Gemita - 2023-03-17 19:10:07

Hayden, I know with so many symptoms it is hard to believe that something isn’t going on.  For your own peace of mind, I think it is important that you return to your GP to tell him about your concerns for your well being. 

Before a diagnosis of anxiety can be made, a full assessment of other potential causes for your symptoms should be investigated.  Has such an assessment been made, I wonder?   That is a question I would want answered by my doctors and to my complete satisfaction.  

I would take your questions back to your GP and address specifically your main concern: your heart.  Explain that you would perhaps feel more reassured if you could have another echocardiogram or additional tests to have a further look at the function of your heart especially after suffering so much upset recently due to grief and stress.  Perhaps try to explain that you are getting increasingly overwhelmed by so many worrying symptoms, symptoms that just won't go away and you are finding it difficult to carry on.

I do not know what blood tests you have had already, but there are specific tests that they can do to look at your heart, tests like Troponin levels for instance to look for heart damage + BNP/NP-proBNP levels and D-dimer to look for heart failure (unlikely) and other causes. 

You could ask for a check of your hormones (testosterone levels) too, for the hot flushes if you haven’t already had this done or ask your GP to look for other causes of flushing and there are many Hayden, some more serious than others.  What meds are you on other than your beta blocker?  Perhaps ask for a review of your meds too.  I presume they have looked at auto immune conditions, anaemia, thyroid, inflammatory conditions, infection both viral and bacterial.  Just keep asking questions until you are truly satisfied.  I recall your mother had Lupus.  Do you have early signs of Lupus?  There may be genetic factors at play here.  You need to reduce your stress levels to prevent serious disease and your doctors must surely see this?

If after further tests on heart function nothing worrying is found but you remain symptomatic, you could always ask for a referral to see another doctor, perhaps a hospital consultant who could explore further what might be going on.  Even if such a referral leads ultimately to a diagnosis of anxiety, you could then ask for appropriate bereavement counselling or CBT (cognitive behavioural therapy) to help with your acute symptoms.  

Something clearly needs to be done to relieve your symptoms Hayden which are real and not imagined.  

In the UK they don’t seem to routinely offer an annual echocardiogram unless there is a strong indication of a problem like breathlessness, extreme fatigue, chest pain, fluid retention and other signs of a stressed heart.  In any event I see you had an echocardiogram last June, so it is very unlikely that your EF would have deteriorated in such a short time Hayden.  Do you know what your EF was at that time?  I recently went over 4 years without an echocardiogram and I know many members here from the UK say much the same.  Unfortunately, an echocardiogram isn't something that we get regularly, routinely every year or couple of years, well at least not here in the UK unless there is a strong indication for one or for continued monitoring

Testing and GP

by PacerPrice - 2023-03-18 06:35:00

Thank you so much again for your replies,

 

My blood test showed a severe vitamin D deficiency 21nmol/L and folate deficiency of 2.1ug/ml. This from my GP has been told to be the cause of my tiredness and leg pains, and maybe even the increase in my low mood and anxiety, but I am still unable to shake off the feeling that something may be going on with my heart. 

I have an echocardiogram once a year, I was told this is just standard procedure with pacemaker patients, and maybe in future will be every 2 years or so. I'm not sure what my ejection fraction was, but I was told that my heart function and structure was perfectly normal. Is it unlikely that since june something has deteriorated that much, and should I accept that the mental health and vitamin deficiencies are the cause? 

I have no fluid retention, breathless or anything else like that, so if it was a failing heart/ low EF, would there be more indications than tiredness? should I accept the deficiencies where to blame and move on? 

I have an echocardiogram booked for september, as I have a levels in june when my anual check up was so it had to be rescheduled. 

Thank you all for your help as usual,

Hayden 

Go by how you feel

by Gemita - 2023-03-18 07:34:02

Hayden, if your Vit D/folate supplements are helping and your symptoms are easing then you may be able to move on and give yourself more time to fully recover which would be wonderful.   If however your symptoms are not improving after treatment (say after a few weeks or however long your GP suggests) I would go back for further advice and follow up blood tests to look at your blood levels again.  But "something" was clearly found for your symptoms of extreme fatigue and supplementing Folate and Vit D should really help.

While your Vitamin/mineral deficiencies will be a strong cause for your current symptoms, I think it goes much deeper since you will still be grieving and a full frank conversation about how best to manage any flare up of symptoms like these in the future may still be needed.  But yes, I would be reassured if you are starting to feel better and are noticing improvements in all your symptoms? How is your diet Hayden?  Are you looking after yourself properly and eating a well balanced diet?  Deficiencies are usually a sign that lifestyle, diet and other factors need to be looked at again?

Oh A level exams in June as well!  That won't be helping your stress levels as I well remember.  I hope the studies are going well.  Please stay well hydrated and remember to stop to eat sometimes!  

I think your heart is sound, but you are still under so much stress and this needs to be better managed.  You need some sort of rescue package at home to draw upon in times of need.  Hubby has one for his respiratory problems (inhaler and antibiotics).  What needs to go into your rescue package I wonder?  Your beta blocker will help with anxiety and any palpitations, so that is something you already have in store.  What else do we need to store there, that is the question for you, for us and for your treating doctors? xx

Biofeedback

by Lavender - 2023-03-18 09:10:45

It sounds like your self talk has the crucial answers! You said, "I was told that my heart function and structure was perfectly normal. Is it unlikely that since june something has deteriorated that much, and should I accept that the mental health and vitamin deficiencies are the cause

I have no fluid retention, breathless or anything else like that"

Hayden-it truly sounds like your heart is ok. I have zero medical background, but your heart dr thinks all is well. 
 

Read the symptoms of fatigue from Mayo Clinic:

Symptoms of chronic fatigue syndrome can vary from person to person, and the severity of symptoms can fluctuate from day to day. In addition to fatigue, symptoms may include:

Extreme exhaustion after physical or mental exercise.

Problems with memory or thinking skills.

Dizziness that worsens with moving from lying down or sitting to standing.

Muscle or joint pain.

Unrefreshing sleep.

Some people with chronic fatigue syndrome have headaches, sore throats, and tender lymph nodes in the neck or armpits. People with the condition also may become extra sensitive to light, sound, smells, food and medicines.

Hayden...you have had such significant emotional stress. Your mind seems to be ruling your body. You could try retraining your brain so it understands that you're not in any danger. There's no one you have to worry about. Your mom is in paradise. Scary and unexpected things happened to those you love. Not you. Your body is stable. Your life must go on to live its best. It just sounds like the strength is sapped out of you.  
 

Be good to yourself. Be in nature as much as possible. Meditate. Pray. Heal and be well. Try saying a mantra to yourself daily.  Repeat to yourself positive affirmations:

all will be well

I am safe

I am not in danger 

I am strong

💓

Heart Patients

by Penguin - 2023-03-18 10:44:57

 As a heart patient a cardiac cause is the go to concern for most of us. You wouldn't be human if you didn't suspect it and your thought processes seem very logical.  You have suspected this first, then gone to the GP for testing and are now going through the list of symptoms and linking them to what's been found by the GP.  There's nothing wrong with that! Sensible, sound  process of elimination. Please check, but can vit.D & folate deficiency cause anaemia??? Anaemia can cause heart palpitations / flushing.  Is it worth asking the GP as I'm no medic? 

A lot of this points to taking care of yourself better. An appropriate diet, stress reduction and some fresh air are probably the first things to address. If you need some advice on how to boost Vit D (the sunshine vitamin) and folate levels (leafy greens) speak to your GP.  Exercise outside (gentle walking) may be a double bullet for tackling stress reduction and boosting Vit D .  A bit of mindfulness as you walk - staying in the moment, noticing emerging Spring flowers and nature and observing and listening to things like bird song, the feel of cool air or sunshine on your skin - can all help.  Breathe deeply and enjoy. 

I'm also quite a fan of affirmation mantras like Lavender's too. The power of words said over and over again is quite surprising. You are stronger than you think. Your doctor's won't let you slip into dangerous territory and will keep you safe.

Also think about your positives. You sound like you have a great deal of emotional intelligence and just from your posts it seem that you may be a lovely person. Think of your assets and strengths. I'm sure the list is long! 

 

Collect data and find an advocate

by Gotrhythm - 2023-03-18 14:38:36

Like many of us here, I know the frustration verging on hopelessness that comes when you feel awful, know something is wrong, and yet are constantly dismissed with a "psychological" explanations. I've been labeled panic attacks, anxiety, neurotice and my favorite, depression.

I ask you, who wouldn't be depressed if they felt like crap, couldn't walk without pain, etc., and there was no help anywhere?

Okay. Here's what I learned. Doctors can't treat what they can't see. At least good doctors won't. So your task is to present the doctors with what they can see or test themselves. The first step is to review your symptoms and ask which of them someone else could see? The flushing is obvious. But if the pain in your leg changes your ability to walk, walking someone else could see.

Next, experiment. Notice what makes symptom worse, or better. See what you can do to deliberately bring on the symptoms.

Headaches are harder, since only you can know what you are feeling. But you can still gather data. Like location of pain, time of day, duration, does Tylenol help, associations to eating, sleeping etc.

Next, enlist an advocate. I lost my mother when I was 17. I was grief-stricken of course. But the  loss I didn't really understand at the time was that I had was that I had lost my advocate. The person who interfaced with the adult world for me, who would fight any battles that I couldn't fight for myself, who was always on my side and at my side.

No one can replace a mother. But trust me, it makes a difference in how seriously you are treated by a professional if they are confronting one person or two. Someone who can say they have seen evidence of what you are saying. You need someone who understands your issues, add the things you might forget to mention, and who can go with you to appointments, ask questions, and insist on further tests, interventions etc.

Read my post 3-18-23 about RNRVAS. My advocate made all the difference in getting the appointment because she could talk about the mental symptoms she observed. Also, she made me go.

Good luck, my friend. I'll be rooting for you.

You know you're wired when...

You play MP3 files on your pacer.

Member Quotes

Do feel free to contact the manufacturer of your device. I have found them to be quite helpful when I have had questions and concerns.