The guilt the guilt my mental health or maybe this is a reality?

Hi, LitleBee. Are you saying you feel guilty when you do things that make your symptoms worse the next day?

It sounds like you have a symptom that is common with Lyme (and with chronic fatigue syndrome/myalgic encephalomyelitis and long COVID) called post-exertional malaise (PEM). When someone has PEM, any amount of physical (or sometimes mental) activity can cause their symptoms to worsen, but sometimes it takes a day or even two days for the flare to occur. I had PEM for years, and sometimes I would do something fun and normal, like going shopping, knowing that I would feel bad as a result, because sometimes it's important for our mental health to be out in the world and feel some normalcy. There's nothing to feel guilty about with that!

Some people with Lyme have PEM and some don't. The ones who don't still exercise, and might post to a forum complaining that they can only run three miles instead of their usual four miles, and those of us with PEM are left feeling pretty envious! PEM makes chronic illness a very different experience, especially for people whose PEM prevents even basic things like cooking, chores, walking around the yard, or even showering. There were times that a single doctor appointment would leave me literally bedridden for a week afterward. I could host a gathering and do fine, but then be bedridden for ten days as a result.

For people with PEM, playing sports and most regular forms of exercise are not a good idea. Movement is still important for blood and lymphatic circulation, digestion, mental health, etc. so it's good to find the things you can do without triggering a symptom flare. At first, all I could do was swing on a porch swing to keep things moving mechanically, and included dry brushing and lymphatic massage when i could manage it, as well as acupuncture and craniosacral therapy. Then I started to do restorative yoga poses that could be done lying down. Eventually I progressed to household chores, regular yoga, gardening, hiking, and long walks.

It's important that we learn to live within our limits most of the time so that we can heal, so yes, if you pushed yourself to do things every day, then it would interfere with your healing. PEM is not just in your mind, and it does mean that something you did was hard on your body. But it's okay to do something pleasant once in a while! You have to balance your mental health needs for company, pleasure, etc. with your body's need for rest.

You also could try some strategies to mitigate the stress that activity places on your body, so you can minimize the PEM the next day. Reducing inflammation and cytokines could help. Ideas: supplements (curcumin, NAC, glutathione, Alka-Seltzer Gold, magnesium, lemon balm, ashwagandha, rhodiola, etc.), no sugar or caffeine, hydration, CBD, taking breaks during the activity for deep breathing and rest (even perhaps meditation), etc.

And when you do feel bad after doing something, then definitely be gentle with yourself! Guilt will not help you get better, and any sort of stress will interfere with your health. Try calming techniques if your mind slips into guilt, like tapping (EFT), mindfulness, guided visualizations, restorative yoga, art therapy, music, acupuncture, acupressure, essential oils, and anything else that helps to calm your emotions and nervous system. You might also consider mental health counseling if you feel like your chronic illness triggers feelings of guilt regularly. being sick is hard enough without blaming ourselves! And you are not to blame.

Great point, Garzie. It's frustrating to know that the people around you have no idea that you will pay for the things you're doing with them, so they will think you are exaggerating your illness because when they see you, you seem fine to them. People really don't know unless they have experienced it.

Gracias a todos por todas las experiencias. Entonces tengo una pregunta más, ¿es posible tener PEM y no tener fatiga?

Astroman, ¿te refieres a un spray de magnesio? ¿Y dónde lo rocías? ¿Sobre la piel?

Thanks so much

You learn your limitations by trial and error. I was too extreme, and gave my examples of what NOT to do if you suffer from "PEM".

I highly doubt that people would injure themselves like I did if they were just trying to live normal lives (my recreational hobbies are not average interests).

-----------------------------------------

Just google Magnesium chloride oil spray. Some retail stores also stock it.

I sprayed the magnesium chloride spray mist/oil on my skin in areas where it hurt, not on my head though.

Sprayed on:
Wrists, elbows, low back, knees while standing or seated on a 5 gallon bucket in my shower. It tingles and is kind of gross feeling and slimy for the first five minutes. It soaks in and dries in about 10 minutes. Then wash off the dried salt.

This above helped with physical pain.

*** I had major mental fatigue also, and took naps/slept for that, even on lunch in my car during employment day****

Your welcome.

Post Edited (astroman) : 3/5/2024 11:12:17 AM (GMT-8)

Hi Littlebee, I feel exactly the same, if I feel any worse then I often blame myself and feel guilt. As if I should have known better not to do X Y Z that made me feel worse. How stupid of me, it's my fault etc. I am very harsh on myself with my conditions.

I worked out the reason I have these beliefs which cause the guilt is because I had an immunologist who diagnosed me with ME/CFS tell me that it was my 'type A personality and goal orientated hard working driven busy personality' that made me sick and I was 'my own worst enemy'. This was when I was an impressionable teenage and first got ill. So ever since then anything that has happened to me with my health I have blamed myself. 15 years later and I have just figured out where this self blame and guilt has come from!

So my question for you is, do you blame yourself for your illness or flare up of symptoms? Which causes the guilt?

Hi little bee I totally understand and you are not alone! We are here for you, and I definitely feel the same!

I don't really know what the best thing for you to help this is but maybe some medications, herbs or supplements to reduce the stress and speaking to someone who can help?

Hi Little Bee, here are some suggestions to help reduce stress

- valerian herbal tincture by global healing
- magnesium l threonate supplement - magmind by jarrow formulas
- liposonal l-theanine with gaba by quicksilver scientific
- cbd oil
- homeopathic rescue remedy

another option is to go to your GP to ask for medication for anxiety but it's important to consider potential side effects etc so do your research and way up pros and cons before taking any medication!

a lot of people benefit from seeing a therapist too

there are devices like sensate, Apollo neuro wearable

breathwork, meditation, body work

brain retraining programmes like Gupta, DNRS, primal trust

I personally find a combination of different things to be helpful, it's often a process of trial and error to find out what works for you

you could probably look up in the search bar - anxiety - to see other people's recommendations too as there are so many options out there, these were just a few off the top of my head!

Post Edited (emma blonde voyage) : 3/6/2024 1:44:19 AM (GMT-8)