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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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Been awhile. Condition still SNAFU

Messages
89
Location
Melbourne
Hi,
I haven't posted for ages but it's a new year so for what it's worth:

I post on behalf of my wife who is very ill.

Her current state in brief-
Can't be upright for more than 15 minutes

Needs help standing to go to toilet and shower and then has to be in bed all day

On heaps of Sleep meds, cycling thru many to retain some effectiveness. Always using seroquel and melatonin though.

Badly limited diet. Uses FODMAP but also has ruled out heaps of naturally occuring chemicals. Meats, tofu rice, gluten free bread and some cooked vegies

I've been too busy with work last year to stay engaged on the forum and also lost my will/confidence after trying to administer low dose Valgan to her with no positive effect. It, in fact, made her sleep alot worse we suspect which in turn exacerbated symptoms like fatigue and pain.

After this we went to see a sleep specialist in our desperation. He was very understanding but believes she suffers from apnoea (also), so now she a has this weird arse mouthguard. Not sure if it's working yet... It has however given her oral thrush due to her terrible immune system...ALWAYS SOMETHING! I scrub that F***er 3 times a day for crisake!
Good news is that she isn't going UP on sleep meds:woot:

Small victories huh

As for diet she went to see a gut guy who took one look at her and wanted to admit her and put the naso-gastric tube in her.
We'd let her weight slip to under 50kg. And she's 5'10"...! Feel awful about that. Like she's wasting away under my nose.
She was resolute not to be an inpatient after her last experience that almost broke her (getting administered IV ketamine and having no access to regular pain and sleep drugs. No sleep. In agony. Early discharge)

But she's also resolute to gain weight.
The Eating disorder specialists say her diet restrictions are largely built up in her head which she finds hard to swallow :lol: and I've seen the evidence time and again of her straying to other foods but there's still something to be said for pushing those boundaries...hmmm

So my aim is to feed her like the proverbial turkey and find something ANYTHING this year that helps her condition.

Diet is just one thing even though her CFS specialist pointed to a high protein, high fat diet as a key to recovery.

It's too depressing for her, turning 30, having lost her 20's and teens to this thing, to lie down and be patient and sick for another year.
And for me too. I hate it. Life would be perfect if not for this sickness.

Thanks for reading
 

lansbergen

Senior Member
Messages
2,512
Does she ever say she feels like she would fancy a certain food at a certain time. like pregant woman do?

I had a time that I ate almost nothing but mars bars and there was a time I needed the eat at least two eggs a day.

After I fell ill I lost so much weight I became skin over bone. After I started to take the immune modulator I gained so much weight my belly looked like I was nine months pregant with twins. The last years my belly slowly has gone to almost normal.

Can she still swallow well? At some point even water did not go down my esophagus.

I have improved a lot but is was a very slow process.
 

Effi

Senior Member
Messages
1,496
Location
Europe
@meeKO not sure what to say, but wanted to let you know that I admire your strength and all you do to keep going. Also admire your wife's strength, it sounds like she is suffering terribly... I hope this new year will grant you some progress.

PS: I've heard of people in a similar situation re:weight and they got it under control somehow (very slowly), so it is possible in some cases. Don't give up. Wishing you all the best... :hug::hug:
 

worldbackwards

Senior Member
Messages
2,051
The Eating disorder specialists say her diet restrictions are largely built up in her head which she finds hard to swallow :lol: and I've seen the evidence time and again of her straying to other foods but there's still something to be said for pushing those boundaries...hmmm
It's important that these restrictions are not ignored, as the wrong foods can cause all sorts of bother. Sensitivities to both food and chemicals are, in my experience, the first thing that people seek to dismiss, because they just can't cope with the idea that something so minor can be so destructive.

If sensitivities are very severe, you can sometimes get into a situation where foods that haven't been eaten for a long time can provoke reactions, but are tolerable with gentle re-exposure over a period (say, eating something once every couple of weeks in a small portion for a while or something). But to be honest, whilst that stuff was really severe I was much happier to keep a restricted diet and use any energy I got for doing something useful rather than messing about with food, which can be rewardless and draining. Quantity is better than variety at this point.

In terms of gaining weight, I've found that this is really important. I fell to nine stone at one point (a long way below what I should have been) and the weakness seemed to feed into the illness - a lack of physical strength in weight terms can make the illness worse in itself. Not to say anything dramatic happened when it went back on, but I did feel better - it's good to be the right weight.

Diet is just one thing even though her CFS specialist pointed to a high protein, high fat diet as a key to recovery.
I'm not sure about this. I think the key is to find the foods that she tolerates best and not to get caught up in anyone else's ideas of what a good diet should be. Someone always has an opinion to shove in on this score and in my experience it's almost invariably wrong. Personally, high fat for me makes me really ill, on top of which it would often just go straight through and I'd lose more weight anyway. Just getting in lots of what she can tolerate in many small meals is probably best, although if there are other specific problems with swallowing and the like I'm sure you'd know best about that sort of thing.

Good luck and keep doing your best - when you're severely ill like that it's vital to have someone on your side to look after you and it sounds like you're doing a great job .:thumbsup:
 
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lansbergen

Senior Member
Messages
2,512
I think the key is to find the foods that she tolerates best and not to get caught up in anyone else's ideas of what a good diet should be.

I agree

Just getting in lots of what she can tolerate in many small meals is probably best,

I am not sure about lots but several small portions was and still is best for me.

When I have a large serving on my plate and my stomach says it is full I stop eating.
 

Hip

Senior Member
Messages
17,824
Badly limited diet. Uses FODMAP but also has ruled out heaps of naturally occuring chemicals. Meats, tofu rice, gluten free bread and some cooked vegies

Has your wife been considered for MCAS (mast cell activation syndrome), which can create all sorts of sensitivities to foods and chemicals?

Drugs such as antihistamines and mast cell stabilizers are used to treat MCAS, and reduce mast cell activation:

H1 antihistamines — hydroxyzine, cetirizine

H2 antihistamines — ranitidine, famotidine

Mast cell stabilizers — NasalCrom, GastroCrom, ketotifen

MCAS is hard to diagnose though, because its symptoms vary a lot from one patient to the next.


I don't know that much about MCAS, however. @Gingergrrl might be able to say more.
 
Messages
759
Location
Israel
But she's also resolute to gain weight.
The Eating disorder specialists say her diet restrictions are largely built up in her head
So my aim is to feed her like the proverbial turkey and find something ANYTHING this year that helps her condition.

I was underweight with food sensitivities - mainly constipation but also diahroah and severe digestive pain.

I was really helped by raw camel milk. It is available in your country too.
Despite the 2nd link below being very muted about the benefits, I strongly recommend you buy the smallest amount possible and try.

Since she is severe, start her on 1 teaspoon a day. Then slowly build up.
Prof Yagil, the world specialist on camel milk, recommends 2 cups per day for "CFS". So that is what I take.

It sounds expensive but if it doesn't help, you can try selling the rest on a local Crohn's disease patient forum so you'll your money back.

You MUST make sure you have only RAW camel milk from a safe and clean farm with good hygiene that other patients with Crohn's disease, diabetes, M.E etc use.
https://www.ima.org.il/FilesUpload/IMAJ/0/48/24201.pdf
http://blog.anytreatment.com/camels-milk-for-autoimmune-disease-buy-or-sell/

There is also a camel milk forum on facebook if you want to investigate further.

I have *severe* cow's milk intolerance. (Half a glass of cow's milk gives me diaroah and pain lasting 2 weeks!) yet was healed by raw camel milk. So if your wife has intolerance to cow's milk she can still take camel milk.
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
Wow, so sorry to hear about your wife. yeah, i'm sure you would be very happy if you could put this illness in the past! This illness puts lots into perspective, and I'm not even severe, although I have suffered crashes, so I have a good idea :(

Is she sensitive to meds? Have you heard of LDN (low dose naltrexone)? Think that might have helped me, but not certain since when i crashed. I had been ill for at least 5 years, and was tired of changing one thing at a time, and not making any gains! So I changed lots, go better, so cannot pinpoint what helped.

Just wanted to mention that I was on Trazadone for sleep when I crashed, it quit working, went on Remeron, and started waking up feeling a little better. Have heard that Remeron gets its name from helping a person get more REM sleep! I started dreaming again, hadn't in years, it was wild for a while, had some crazy dreams!

GG
 
Messages
89
Location
Melbourne
I don't know what to say except wow, you're a star.

Are you in touch with other carers of severely ill people with ME? Some of the ones in the states have good doctors and might be the best source of ideas.

But otherwise ... good on you. I hope things take a turn for the better some time soon.
Thanks for kind words @sarah darwins . I'm in Australia and I haven't looked in to any networks for carers but definitely a good idea.
Thank you
 
Messages
89
Location
Melbourne
Does she ever say she feels like she would fancy a certain food at a certain time. like pregant woman do?

I had a time that I ate almost nothing but mars bars and there was a time I needed the eat at least two eggs a day.

After I fell ill I lost so much weight I became skin over bone. After I started to take the immune modulator I gained so much weight my belly looked like I was nine months pregant with twins. The last years my belly slowly has gone to almost normal.

Can she still swallow well? At some point even water did not go down my esophagus.

I have improved a lot but is was a very slow process.

Hi @lansbergen. No nothing particular like that. We definitely feed her a lot of eggs though. Trusty staple!

YEah she swallows well.

What was the immunomodulator you were taking?
 
Messages
89
Location
Melbourne
Thanks @Effi
Yeah we're hoping for tangible progress this year. Just have to plot the course now.
I know we'll get the weight back on cos she's a determined and stoic person.
I honestly don't know how she, or any of you, keep it up.
Reading some of the obituary pieces on the forum I realise some don't but having everyone supporting here is just great.
 
Messages
89
Location
Melbourne
Thanks @worldbackwards . You're really reaffirming what she suspects/feels in her gut every day.
It's important that these restrictions are not ignored, as the wrong foods can cause all sorts of bother.
It's true and she's very dilligent about sticking to it but I also like when she ventures tentatively out.

Personally, high fat for me makes me really ill, on top of which it would often just go straight through and I'd lose more weight anyway.
Yes. Exactly this. Some things in the higher fat range are tolerable but it's pretty dicey.
 
Messages
89
Location
Melbourne
Hi @redrachel76
Whoa! Camel Milk. I know we have a lot of feral Camels in the outback roaming around so someone must milk them. And if it benefits us then all the better.
I'll check that out. It sounds like it works wonders for you.
She is of course lactose intolerant but it's not nearly as severe as yours.
I'll get on those links
Thanks.
 
Messages
89
Location
Melbourne
Wow, so sorry to hear about your wife. yeah, i'm sure you would be very happy if you could put this illness in the past! This illness puts lots into perspective, and I'm not even severe, although I have suffered crashes, so I have a good idea :(

Is she sensitive to meds? Have you heard of LDN (low dose naltrexone)? Think that might have helped me, but not certain since when i crashed. I had been ill for at least 5 years, and was tired of changing one thing at a time, and not making any gains! So I changed lots, go better, so cannot pinpoint what helped.

Just wanted to mention that I was on Trazadone for sleep when I crashed, it quit working, went on Remeron, and started waking up feeling a little better. Have heard that Remeron gets its name from helping a person get more REM sleep! I started dreaming again, hadn't in years, it was wild for a while, had some crazy dreams!

GG
Hi @ggingues
Yeah she has tried LDN. Sadly didn't do much. She can be sensitive but I don't think there were any problems with that.
Yeah we've been trying alot of different sleep meds and clearly tolerance was going up so were trying to cycle afew and give this mouth splint thing a chance. Here's hoping. She needs that REM sleep. I don't think Remeron is available here... but I'll double check.
Thanks.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Thanks for kind words @sarah darwins . I'm in Australia and I haven't looked in to any networks for carers but definitely a good idea.
Thank you

There are definitely some carers around these parts but I forget the names. I don't think there's a sub-forum specifically for carers (could be wrong), but maybe there should be? Just to make it easier to get in touch? You guys have a lot to deal with.

Anyway, ignore me. All the best.