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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Resignation

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
I stopped researching and looking for answers several years ago. I've had ME/CFS for almost 25 years and medical science is still just as clueless today as they were back when I was first diagnosed. At the beginning I was confident that a cure and/or treatment would be in the not too distant future, however, 25 years later I'm not so sure anymore. I've accepted that I could possibly have this for the rest of my life.
 

Timaca

Senior Member
Messages
792
Certainly this is a puzzling illness that the brightest minds in medicine have yet to figure out. And while I have acknowledged that I have a baffling illness and that it does affect my life greatly, and probably always will to some degree, I am not giving up trying to understand it and help myself get better.

On Nov. 23rd I hiked to Cedar Ridge in the Grand Canyon.... a 3 mile round trip hike with a 1000 feet of vertical (each way). I haven't been able to do that in over 12 years! Of course before I got CFS I was backpacking in the Grand Canyon and doing many more strenuous activities, but that fact that I could do that hike and feel pretty good afterwards was huge! (Really huge!)

Then, this past weekend (after doing very well since the 23rd) I fell apart again. But, I seem to be rapidly recovering. (Hope so anyway). For me, it seems to be a combination of pathogens reactivating and also food allergies / intolerances. I honestly think the pathogens have set off the food issues in me. The food issues seem to be a histamine intolerance, probable benzoate intolerance, allergy to wheat and oats (wheal and flare response to scratch testing at the allergist's office) and possible (read: probable) issue with corn and rice. I'm just trying to figure out what I CAN eat and still feel good.

I have accepted that I'm sick with a bizarre, little understood illness. But, since I've come so far from where I used to be at the worst of my illness, I want to continue to figure out what helps me and thus could possibly help others. If I win the lottery, I know where money is going to go!!!

Check out my blog if interested.

My very best to all who suffer with this dreadful illness!! I can relate!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I get sick of taking pills but i cant sleep very well without meds.
Pills for my back or i will remain bent over in pain.
Antivirals if i stop i get worse viral symptoms and or shingles.
Sinuses are a revolving door, if left untreated, headaches and fatigue get severe.
Several hormones i use that if i stop they plummet to levels of an 80yo and feel worse.

Every so often i start to add up the fortnightly cost of all this but just cant stop anything as my level of function will drop. I have stopped and started things a few times and know i need these dam things or everything goes to shit real quick.
 

digital dog

Senior Member
Messages
646
Well it is 4.25 in the morning and I have yet to go to sleep despite being tired all day.

It is times like this that I would give ANYTHING for a medication to help me sleep semi-normally.

I get up with my child in two hours.

This is no life. This is torture.

I cannot continue like this so what the hell do I do?
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
From what I have read, there have been several people who recovered after about 7 years. If somebody has had it for more than 10 years, it's very unlikely that they will recover. (Although I have seen about a group of women who got better after 15 years.)
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Sorry our messages crossed over, mine was not intended as a reply to you, they just got posted at the same time...

I was talking about recovery to almost full pre- illness levels. There are of course, a higher percentage of people whose suffering diminishes enough to have some quality in their lives.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I "accepted" I was ill with something labeled "CFS" back in 1995 after sudden onset in 1993. I did not accept limitations on my functioning, so I finished medical school and residency, having had a near remission in 1997. Then I ran out of steam around 2009, and have only been able to work sporadically since then.

I have tried many medications and approaches over the last 20 some years. Some medications made a big difference for a while. I do not know what caused my near remission in 1997 (rest, changing silicone implants for saline, yoga, Tibetan medicine, supplements, who knows?) Haven't been able to replicate it. Now, however, nothing seems to make much difference.

Things have gotten worse after the 20 year illness mark, pushing me to finally and aggressively seek possible answers: looking into Lyme, and now, seeing Dr. Kaufman at OMI and for the first time having the immune function tests that everyone's been talking about all these years. (I do have low NK cells! It's nice to fit in! :p) And I am really hoping that OMI will be able to provide some treatment that makes a real difference.

Anyway, I fear that if I cannot find a way to improve at this point, I may lose the ability to work altogether. I am my husband's and my only real source of income, so that is a terrifying prospect.

Feeling useless, with little hope for improvement, reliant on pain medication that social forces are pushing to make inaccessible, constantly in a irritable state that is bad for my relationship with my husband, yes, these naturally lead me to wonder if the world would be better off without me, and I would be better off without myself. I want to be able to focus on acceptance, meditation, and practice what I believe spiritually: kindness, generosity, etc. but all of these take energy that I haven't got.

So, I just keep "existing" as someone said, and try to keep up with the hoops one must keep jumping to maintain a viable medical license.

End of vent. Thanks for listening.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Well it is 4.25 in the morning and I have yet to go to sleep despite being tired all day.

It is times like this that I would give ANYTHING for a medication to help me sleep semi-normally.

I get up with my child in two hours.

This is no life. This is torture.

I cannot continue like this so what the hell do I do?


DRUGS
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I "accepted" I was ill with something labeled "CFS" back in 1995 after sudden onset in 1993. I did not accept limitations on my functioning, so I finished medical school and residency, having had a near remission in 1997. Then I ran out of steam around 2009, and have only been able to work sporadically since then.

I have tried many medications and approaches over the last 20 some years. Some medications made a big difference for a while. I do not know what caused my near remission in 1997 (rest, changing silicone implants for saline, yoga, Tibetan medicine, supplements, who knows?) Haven't been able to replicate it. Now, however, nothing seems to make much difference.

Things have gotten worse after the 20 year illness mark, pushing me to finally and aggressively seek possible answers: looking into Lyme, and now, seeing Dr. Kaufman at OMI and for the first time having the immune function tests that everyone's been talking about all these years. (I do have low NK cells! It's nice to fit in! :p) And I am really hoping that OMI will be able to provide some treatment that makes a real difference.

Anyway, I fear that if I cannot find a way to improve at this point, I may lose the ability to work altogether. I am my husband's and my only real source of income, so that is a terrifying prospect.

Feeling useless, with little hope for improvement, reliant on pain medication that social forces are pushing to make inaccessible, constantly in a irritable state that is bad for my relationship with my husband, yes, these naturally lead me to wonder if the world would be better off without me, and I would be better off without myself. I want to be able to focus on acceptance, meditation, and practice what I believe spiritually: kindness, generosity, etc. but all of these take energy that I haven't got.

So, I just keep "existing" as someone said, and try to keep up with the hoops one must keep jumping to maintain a viable medical license.

End of vent. Thanks for listening.


Glad you joinedthe lownk club ;)
 

PNR2008

Senior Member
Messages
613
Location
OH USA
I know I'll never get better and will probably get worse as time passes. Actually I never thought I'd live this long, 66 years. This is almost a shock to read because 28 years ago I was the CFS cheerleader. So long ago I have tried things that patients are doing now and I think, I hope it works for you.

My last thing was to move out of a house that I lived in for 30 years. The house was old and the neighborhood changing so I thought maybe I will enjoy life and improve and I did for about a year. The housing crisis hit and I did everything to stay in my new house but could only do it for 7 years.

Now I'm moving again to less expensive digs but nothing special, no view, much smaller. I will move in three days and am terrified. Why? because this is the last chance. I'm hoping to become solvent in 2 years, then my life will be financially easier. More money is good but how good if you're constantly in bed. I am so drained EVERY DECISION is difficult and people are tell me to pare down more. I want to scream "This is my stuff" it's part of me and once again I have to lose or let go of myself.

I just can't lose anymore. Finally family is realizing how little they helped me because other people are noticing. It's too late. I will not take my life but I know it's to late for me.
 

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference. (truncated version)

I have this prayer on the wall in front of me so I read it many times a day. The longer I am stuck in this bedroom, the more sense it makes.
I don't believe anyone on this forum has 'given up'- acceptance, not of cfs, but of who and where you are is the path of peace.
 

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
Has anyone got to the point where you can accept your condition and limitations? Where you are no longer searching for the next doctor, cure or treatment?

As other people have commented, these are two very different questions.
This is the second time in my life I have been seriously affected by cfs. The first was in my 20's and early 30's (1990's) when I tried so many treatments- all of them expensive, most of which did not help at all.I am now 47 mainly housebound, and in more or less constant pain, which at times becomes overwhelming.

I am in the UK where the NHS does not offer any treatment for cfs, and my hubby and I don't have money to waste on 'miracle cures' that probably won't work. I concentrate on what I can do to help myself (' the courage to change the things I can')- pain relief, foods that suit me, vitamins, prayer, meditation...and this forum. For me the miracle is that I keep going through another day.

The best money I have ever spent has been in the last year for low cost counselling. It is helping me build stronger emotional resources so that I can cope better with whatever life throws at me,and of course with a life of illness and disability, as it is at the moment. I stress that I am not saying that my problems are psychological, but rather that my resources have been completely depleted. by physical illness.

Despite this I have recently had a melt-down and needed to start anti-depressants, and I would urge anyone who is in a dark place to ask for help. This illness drains every part of you physically and emotionally and there is no shame in not coping. I am already feeling the benefit of my serotonin being replenished.

Sending all of you a really huge :hug:
 
Messages
93
Well it is 4.25 in the morning and I have yet to go to sleep despite being tired all day.

It is times like this that I would give ANYTHING for a medication to help me sleep semi-normally.

I get up with my child in two hours.

This is no life. This is torture.

I cannot continue like this so what the hell do I do?

Sleep deprivation is a proven method of torture! So it is so important to plan for some sleep. Most of us have sleep issues and I am quite lucky to have a doc who prescribes sleep meds for me. Also I take melatonin. Taking these does get me to sleep and I find if I can sleep for fourteen to sixteen hours a more human being emerges. Is there some way to have a friend take your child for a sleepover so you could give a sleep marathon a try. Since I do not know all your challenges you can certainly just call me naive. We all though need more resources to lighten our lives so we can feel the joy of helping others.
 

digital dog

Senior Member
Messages
646
Can't take drugs for sleep Heapsreal. I have worse insomnia than anyone I have come across but I cannot take anything for it and, yes, it is torture. Learnt over twenty years that drugs make things much worse for me. God how I would love to take a drug that helps me sleep but the anxiety, akathisia and lethargy that comes with them is worse than the insomnia.

I got a grand total of one hour last night. I couldn't get my child to school and I have been crying with my mum and screaming at my husband.

My life is pure, unadulterated hell. I can't really see myself going through this for much longer.

Husband's advice is to see a doctor but I have done that again and gain and again and there is nothing they can do for me.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Can't take drugs for sleep Heapsreal. I have worse insomnia than anyone I have come across but I cannot take anything for it and, yes, it is torture. Learnt over twenty years that drugs make things much worse for me. God how I would love to take a drug that helps me sleep but the anxiety, akathisia and lethargy that comes with them is worse than the insomnia.

I got a grand total of one hour last night. I couldn't get my child to school and I have been crying with my mum and screaming at my husband.

My life is pure, unadulterated hell. I can't really see myself going through this for much longer.

Husband's advice is to see a doctor but I have done that again and gain and again and there is nothing they can do for me.

Understand .
There was a time i couldn't sleep even on meds.
Drs dont really have the answer for chronic insomnia other than usual crap about sleep hygiene stuff.

Fingers crossed for you.
 

digital dog

Senior Member
Messages
646
Im desperate to try all the sleep meds again. I have a whole stack of them but then when I read my dairies about how they affected me it seems like such a stupid idea.

My brain is so screwed up.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Im desperate to try all the sleep meds again. I have a whole stack of them but then when I read my dairies about how they affected me it seems like such a stupid idea.

My brain is so screwed up.


Some of the symptoms u said you got from sleep meds seem like they were mainly from sedating antihistamines or antidepressants .

I'm guessing you tried benzos and z drugs like zolpidem?? As they have short half lives, so if side effects than they shouldn't last too long???

The other thing to look at are hormones . Im no expert but alot of sleep issues in ladies can be from low progesterone .

I'm just throwing ideas out there.
 

digital dog

Senior Member
Messages
646
Thanks Heapsreal, I really appreciate you taking the time to post.
I was on benzos for a long time (prescribed by Dr Lewis, a CFS specialist, in Melbourne) and they seriously screwed me up. I reached tolerance after only six months but didn't realise. My sleep was horrendous for the next two years until I made the connection. It took two years for me to go through withdrawal. If I take a benzo now, I get such acute rebound anxiety it is not worth the gains (I take one every six months in times of life-threatening desperation).

Z drugs used to suit me (taken on and off for two decades) but recently they make me very depressed, very quickly. Especially zopiclone. I feel better on four hours kip, than six medicated.

I do think my sleep is dictated by my hormones (isn't everything!) but I have tried so many different hormone treatments and everything has had profound and long lasting negative effects.

The only thing that is slightly different which I havent tried is lamictal. I have some but too afraid to take it. I hear that it can make sleep worse in some people.

I think I just have to accept that I either live with this inconsistent, agonising health or commit suicide. I have run out of options now.

At present, I choose to endure my life. Take what tiny bits of pleasure come my way and do my best.

Sometimes doing my best is just staying alive.

Sounds very dramatic and Im sorry if this upsets people. it is just my reality. Who would have thought! I was an insanely optimistic person before all this with a HUGE passion for life (which I still have).

X
 

digital dog

Senior Member
Messages
646
Let me phrase this post another way:

If someone told you that you cannot improve through any intervention how would that sit with you?

How do you think you would cope with this realisation?

Would any of you believe that your life was too painful to continue?

Would you still cling onto time being the greatest healer of all?