Anyone with M.E. or Chronic fatigue syndrome?

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lilly
@lilly
last year
30 posts

I feel like this is a beacon of hope for me this site ive just joined you all yesterday. I feel a bit overwhelmed by other empath forums. It can be all a bit too much for me. I want to say but dont know if this is the right place. I have developed physical illness's through i believe having this trait or personality. I have got so ill. I am now bedbound and have to spend my life in a darkened room cos everything in the world makes me feel desperately ill. I have symptoms that just come all day no matter what i do. I am continualy exhausted and can do so very little. Im in touch with other people with my illness, I feel alot of them are empaths too. I believe that being an empath has caused me to get ill with this debilitating and life destroying illness. I would love to learn some ways to learn to turn my nervous system down cos it has gone into overdrive and is hyper, hyper sensitive.

I dont want to scare anyone but please people be careful and work hard at turning down your sensory system and take messages from your body seriously. If something is overwhelming for you get away from it if you can. Dont worry about what other people tell you or what others will think of you. Listen to your body. I always wonder if id listened to my body more would i have got ill in the first place.

But i just wanted to put awarness out there that this can lead to very physical damage to the nervous system and that opens the doorway to alot of illnesses. Take time to rest and recuperate from the strains of life. If you are in a very stressful work or home life situation. Please dont just carry on valiantly hoping it will get better one day. You must make time for yourself to de-stress. Rest is so important to us. Please take me as a warning. And make time for your poor worn out and highly responsive body dont thrash it. I always thought i was doing enough to protect myself but looking back i did all the wrong things. I did alot that was sensable but also i could have been kinder to my body and listened to it, I think this is one of our jobs as empaths to learn to listen to bodies. Society tells us to ignore intuiton and push them Just look at the way we excersise...feel the burn! And to be productive at all costs. Like our bodys are machines. But they are so much more than machines, They need our help to look after them they are helpless and vulnerable almost like a child they have to do what we say and if you abuse them they will turn out broken. Its so hard when our bodys are a source of pain and overwhelm that we are used to just trying to ride through the rollercoaster of being in the world. But care is needed thats what my message is. Take care of your child like physical side.


updated by @lilly: 01/10/17 05:50:48AM
Lavender&rose
@lavenderrose
last year
82 posts

I hear you, lilly. I think learning to really listen to my body and learning how to care for it, given the empath thing I have, aside from anything else, has been one of the most important lessons of my life - it has certainly led to a far better quality of life. If we don't learn this, some of us can become very ill. (Been there, don't want to go back.) I hope you are on the road to recovery now, a slow road, to be sure, with many twists and turns. Keep looking for the light at the end of the tunnel! It's there in small ways, every day, if we turn our heads and look for it, and then focus on that.

lilly
@lilly
last year
30 posts

Hi lavender& rose Thanks for the reply. I think its so important we learn to respect ourselves and our bodies. Im still learning or rather unlearning damaging ideas my parents gave me when i was young. Like basicaly ignoring how i feel and pretending its not there or being told its all in my head. So therefore ignore ever message my body is giving me. So many conflicts going on inside.

Im glad you have learned from your life important ways to keep yourself healthy. It does take a long time and a long and winding road. But its our lifes work isnt it. i hope you continue to learn good leasons and continue to keep yourself healthy and happy. I think for me apart from what ive said above it is about finding ways to switch off and not stay on the alert all the time and not be always still picking up information. But thats so hard to do. Finding ways to heal from the past and relax in the here and now and let the future take care of itself.

Karen2
@womanwhowalks
last year
787 posts
Hi...one of the most difficult things to do is to unlearn the things we've learned throughout our lives...the subconscious is FULL of unneeded...unwanted programs that confuse the body and mind...also...if you haven't cleared the energy links and cords to people on a regular bases...THOSE links will transfer someone else's energy to you and set up shop in your system...confusing your system even more....i've severed so many links in the past year..and I continue to do so on a regular basis....the other day I severed links to a few child hood friends that I haven't seen or heard from in years and their families...I didn't know they were there...but I decided to try...the shift in my energy was intense when they came out...while your lying there...research removing energy links...and give it a shot...clearing your energy out of all other people's links...and take yours back...may help close the energy loss...it has helped me a great deal...you can also clear all energy links to other people who've lived in your house or apartment...if someone who was sick lived where you live at any time they could be transfer illness to you by still be g links to your house...my house used to be a boarding house with a lot of different people living here...I keep getting mail for these people who's energy I feel coming off the envolope...so their energy is still attached to this house via various means...so I cleared them off...it takes time to do this. ..but as I go I continues to feel lighter as those links come out...i've gone way back into childhood and found the links that cause me pain...when those are gone I may have a good cry...then i'm good...lol...and...you can clear your parents and family out of your energy...I do it all the time with my own family...when I can't get out of socializing with them...I clear their links after being around them...I have to...
Lotusfly
@lotusfly
last year
410 posts

I have chronic pain (fibromyalgia). Being raised in controlling and dysfunctional households and environments, and being sensitive, I absorbed all of the traditions and messages, while trying to understand the world. My mind doesn't forget something once learned, so it's taking a while to let go of the old beliefs and replace them with more positive beliefs and my true self.

lilly
@lilly
last year
30 posts

hi karen how do you do this clearing the links. What do you visualise or say. I had someone show me that draw a figure of eight on a peice of paper one bit is you one bit is them an then to cut it in the middle and burn the two pieces she called that cutting the ties. How do you do it? I think it is maybe a good idea to do this but it will only be part of the puzzle for me. But thanks for this idea.

lilly
@lilly
last year
30 posts

Hi lotus fly yes this is where mine came from my dysfunctional upbringing. Its so hard to unlearn what has been a habbit for so long but we must try otherwise we are just giving into it and we might even be suprised how far we can come. I wonder how long have you had the symptoms of fibromyalgia cos im researching physical pain from my childhood and if it could have been FM back then even. Its so hard to suffer everyday and know its cos of the way you where introduced to the world and you have a lifetime of work to unravel it all. Im sorry your in pain. I dont remember a time i wasnt in pain emotional and physical. I know the two are link inextricably. I hope you find ways to be in the world without suffering and that you find a way to your true self.

Cheshire Cat
@cheshire-cat
last year
1,185 posts

Hi lilly,
I am so sorry to hear you have CFS/ME. I am homebound with FMS, CFS and advanced Lyme. I am not bedridden, but feel I will be eventually unless my end organ damage from Lyme takes me out first, as my illness continues to progress. I am only still here due to alternative treatment of the immune, mitochondrial and methylation gene defects we have, which make these epigenetic illnesses.

I used to run a support group for FMS and CFS for ten years, before Internet support groups took over and I got too sick to drive. I also have a couple of online friendships with other CFSers that have lasted over 15 yrs. now. The lack of validation and the name of the illness, CFS, which belittles the seriousness of this illness is a major problem, along with all you mentioned.

I do know people with it who are not empaths at all, but have noticed they tend to have milder illness. I agree with you that many of us are empaths or at least HSPs. I also feel I would not have gotten these illnesses if I were not an empath and on the wrong path....

I was taught "business before pleasure" and that all my work must be done before I can allow myself to relax or have any fun. Both parents were alcoholics. I live in a dense, noisy, overwhelming place and can't move, or I'd be long gone back into the woods where I belong,ticks or not! I agree when you say get out of the overwhelm if you can, whatever or whomever it may be. I can't leave my spouse and am too sick to be that far from a hospital now. I advise people not to wait that long. I know several people on this forum who've convinced spouses to move them to the country and are much happier.

May you be blessed with better health,and thank you for the much needed message,
Cheshire Cat

lilly
@lilly
last year
30 posts

Hi cheshire cat im sorry you have these illness's thats horrable that you are so ill. I havent been tested for lymes i keep meaning to go for tests.

But blood tests make me so unwell.

Id be interested in what alternative treatments youve had that are helping you, Ive had various things like reiki, cranio sacral therapy. i take lots of supplements that have helped my immune system alot and stopped me getting almost constant infections like i did at one point. i used to get ill with something so often i would only usualy have two weeks maximum in between infections. Now i almost hardly get any.

Ive also have fibromyalgia which means almost constant pain. But mine is mostly bearable at the moment. But i have wanted to take my life cos of the severe agony i have had with it in the past. I dread it getting that bad again. But we cant live like that we have to make the most of whatever good we have.

Im sorry you cant move to the country like you want to. I used to long for the country too but it would be impractical cos i need so much help from others i need to be near amenities and care agencies etc. So ive chosen a quiet street in suberbia. I actualy have like a mini wood on the green out the front of my house. With lots of lovely trees. It has made a big difference to me living here and ive improved since i came here and the quiet makes such a difference.

I really hope one day you dont have to be so close to hospitals. But i know recovery is a fairy tale for some people. I hope alternative medicine continues to help you.

Take good care of yourself

Cheshire Cat
@cheshire-cat
last year
1,185 posts

lilly,

I'm glad to hear you've found such a quiet, peaceful place to live. That should help a great deal with the overstimulation problems we have.

The program that worked best for my Lyme is called the Cowden Protocol. The main ingredient, Samento, kills just about anything that ails you, and was proven by our NIH to work better than the usual first line antibiotics.

I also take a lot of supplements for the symptoms, without which I would not have been able to make myself stick around, since they are the only thing making some symptoms, like neuropathic pain, bearable. I didn't used to think anything could hurt worse than fibro, but neuropathy is ten times worse and about 40% of fibro people will get it. Some things I take are for the proven deficiencies we have, some for mitochondria, antioxidant repletion, methylation repair, etc. I don't consider them supplements, but necessities and have given up all other expenses people take for granted to pay for them. I'm happy to hear you've stopped the constant infections. I am so isolated, I almost never get those, which is both good and bad.

Cranial-sacral therapy got rid of my TMJ completely. I wish I could afford short massages, but I can't and am stuck at home anyway. Long ones cause too much toxin release and make me extremely ill. Acupuncture did not help and emptied my wallet. I have a friend getting results with infrared sauna. I've not tried that.

I do think getting properly tested for Lyme and confections is worth it, since it is a progressive illness and much harder and more costly to treat, with less chance of remission let alone cure the longer it goes on. It is just one tube of blood, sent to IgeneX labs in Palo Alto, CA. They have all the info on how to do it online, I think. I was able to get it done locally, since we have a huge alt. med. clinic here.

If you have not already, you can try ProHealth's fibro forum, and lymenet.org flash discussion forum is also a good forum to visit. I wish you the best and hope for your recovery.

lilly
@lilly
last year
30 posts

Hi cheshire cat im sorry to hear you are so issolated as this. Its hard the issolation isnt it i wouldnt see anyone except my carers if i didnt have my father he is a lifeline to me as are my carers. Do you manage to get out at all? I havent been out yet this year but im planning an ambitious escape for an hour to my local church who are running a talk on celtic chrisianity. I really want to go even if its just for the hot chocolate they are serving at the end! But serously it is ambitious but i am going to try hard and hope i dont get pay back.

I have online and penpal friendships but not many face to face people. One lady from church is all i know really since i moved here 10 years ago. No one else wants to bother with an ill person it seems. Ive only really met carers anyway. Im in touch with two ex carers and thats all. It makes me feel scared for when my dad is no longer with me he is coming up to 80 in a few years so he isnt young. He is all the family i have in the world i literaly have no one else. And know no one in this area either cos ive only been out a handfull of times since coming here. It does eat away at you. But im just so grateful for the internet and my mobile for txting and my landline phone for phoning the samaritans which is a helpline for if your feeling low you can just phone up and talk to someone. They are a godsend.

Its good you have found some things to help you over the years. And craniosacral helped you. I had good results with shiatsu very gently and also reflexology. I now do hand reflexology on myself at night to get to sleep. Also i wanted to say have you considered an elecrtic handheld massager to use on yourself. I have a long handled one and do the whole of my back every other day and im alot more calmer person than i was and ive only been doing it a few months. I also do facial and head massage on myself with just my hands. I dont do it for more that a few minuites but its made a big difference to my core baseline state of calm which in turn has helped everything including pain. Also i do reiki on myself too with great results. Just thought its worth mentioning to you. Its hard with money to be able to afford treatments so the more you can do yourself the better.

Thanks for the name of the forums i will check them out. I hope your illness stops progressing and stabalises. Im slowly getting worse but i think its aging all though im only late 30s but still we age quicker when we are sick.

Thinking of you xx

Cheshire Cat
@cheshire-cat
last year
1,185 posts

Gee Lilly, I am really sorry. I do understand and empathize with the isolation you feel. It seems yours is worse than mine. I also rely on online friendships, some of which have lasted 20 yrs. now. I've been sick since I was 34 and am now 65.

My only family is my spouse, who is still doing construction work with a serious heart condition, since all our life savings were lost in the 2008 stock market collapse. I am terrified he will die before me. I do have 2 friends here but only see them about 3 times a year and both work more than 100 hrs. a week. One lives a block away but has CFS and cares for an elderly woman with AZD full time.

I do get out to doctor appts. with my spouse driving me, since I have about 8 doctors. I hate going, but can't get the drugs keeping me alive without it.

Thanks for the massager idea. That is a good one. I think the forums will help you a lot with other ideas.

If you need to talk more about this, you can PM me.

Big hugs of hope coming your way,

C. Cat

Snap
@snap
last year
103 posts

I don't have M.E. or CFS. However I've had periods with awful health in the past but in recent times I've never felt better in my life. Downside of being the way we are is that we get symptoms. Upside for me, at least, is that I can use intuition and sensitivity to identify things that help.

Here are some things I've learned through extensive and intensive research guided by intuition, and things I've tried that really work for me.

1. During my worst periods there were definitive physical causes -- it's just that my symptoms don't fit with the supposed causes. I was anemic due to anti-inflammatories and I had a chronic lung infection with Chlamidophilia Pneumonia. Both caused me hell. In both cases I improved enormously once the cause was sorted out.

2. It goes with out saying, but living healthily I am so much better. I eat (roughly speaking) a paleo diet, almost entirely without processed food. I drink only filtered water. I get SUN (most people are vitamin D deficient). I think these things impact a lot on our bodies (not just physical) and capacity to deal with energies.

3. I get enough sleep. Sleep is so terribly important (but I know you may struggle to get quality sleep as I have in the past).

4. I take ORMUS. It is absolutely awesome. I've never slept so well as with ORMUS and I can feel it assists me to stay in a higher vibrational energy more often. However some who are on the psychic side have to have small amounts, note.

5. I have a Radial Appliance (this onehttp://www.cayceconcepts.com/RadialDevice.php ) invented by Edgar Cayce. It is absolutely remarkable for restoring energy when I am drained. Incredible. You can feel it work wonders with the energy field while meditating. Also good for quality sleep.

6. Pulsed Electromagnetic Field Therapy is amazing for energy, mood and pain. I have an "Earthpulse". There are cheaper ones out there and they can be made cheaply as they're simple. Search Schumann resonance if you're interested.

7. The Violet Ray is a very hand device. It probably gives energy and it can definitely help certain kinds of pain, particularly nerve-related (e.g. headache stemming from nervous in the spine).

8. Zeolite is great for ridding toxins, though I have to go lightly as I get some 'healing crisis/herxheimer' reaction with it, but that's a good sign. It's probably good for infections also.

In my humble opinion, CFS is likely to be caused by chronic infection. See Charles Stratton's articles available online regarding C.Pneumoniae. I can give a lot more information. What is happening is that the medical establishment virtually only recognises acute infection, when a lot of people have chronic infection--often multiple chronic infections. I have experienced mild(ish) chronic fatigue with my chronic infection, though 'asthmatic' symptoms were the primary symptom. I can tell you a lot more if you're interested but this post is already long.

In short, yes we suffer more but on the other hand we're best placed to heal ourselves, in my humble opinion. I have researched and intuitively known what will work, and almost always things I try do help. I got on a roll and I'm a different person now.

Best, S

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