AIBU to feel hopeless about recovery?

[seriouslynonames]

I think my AIBU is this - AIBU to think there is no hope for me to make a good recovery? I want to believe there is but I feel so ground down I am struggling to know where to start.

Has anyone had experience of recovering from fatigue based illness, along with gut issues?

I have a whole range of problems that may involve some or all of chronic fatigue, connective tissue problems, histamine intolerance or mast cell reactivity, awful gut issues, orthostatic hypotension, anxiety (always been on the anxious side, now it's worse due to all the physical symptoms).

Bowel/digestive issues have been long standing but now worse. I have long felt I never had enough energy but since I had covid and then long covid, the fatigue is debilitating, I can't work. Some days I can function around the house normally and get the kids places, other days I can't get out and about.

I had slowly improved over a couple of years, after the initial long covid type illness that started mid-2020. I tried returning to work (remotely) but struggled massively and took redundancy when offered. I had a hysterectomy due to severe prolapse a year ago, and struggled to recover. I am now back to my worst in terms of being able to function day to day and the heat this summer has absolutely finished me off.

• is there hope for a second, more sustainable recovery? I never fully recovered but kind of gave up trying to find out what works and just tried to get on as best I could (which inevitably meant pushing through to my detriment). Any experiences would be helpful

• is there hope for the NHS to help me in any way? Or if not, any private providers? Most medical professionals I have seen, NHS and private, just don't know what to do with me because they are all specialists in one thing and my problems are multi-system. GP sympathetic but doesn't do anything (even when he says he will refer for various things so I have to keep going back and have the same conversation)

• how do I work out where to start? I think my gut is the worst issue (apart from fatigue) but it's so delicate that any attempt to help it can make things worse. Any recommendations for experts on how to re-build a damaged gut would be very welcome!

• what kind of therapy might help me - to manage how absolutely fed up and frustrated I feel about being completely unable to participate in my family life, to manage how anxious some of the more alarming symptoms make me feel (I don't feel safe in my own body) and to help me keep hope alive that things can get better?

Thanks for any thoughts on any or all of the above! Sorry it's long 😬

Yes there is hope, but recovery may not look like what you think. A good friend of mine had CFS and has also been diagnosed with histamine intolerance (I'd never even heard of it) and she reckons that she got back to 70% of what she was doing before. (Mind you, that 70% is closer to my 100%.) She is careful with what she eats because of the histamine thingy, and that, exercise and a good routine really seem to have helped her. Other friends also have various health issues combined with CFS and the ones who are coping most successfully are the ones who have scaled their lives to fit them as they are now rather than as they were before they got ill. So balancing work with adequate rest, different leisure activities in some cases and focusing on what they can do seem to cope better than the one who wants to be doing everything that she could before she was ill, has never rested adequately and finds that a day of her old lifestyle usually means a week of bed after.

Just a thought though - this isn't something I know anything about, but have you been tested for Ehlers Danlos Syndrome ( can't remember how it is spelled)? I seem to remember a thread on here where it transpired that the OP and various relatives had it, and the cluster of illnesses/symptoms seemed familiar.

Thank you @nonevernotever

I definitely am not aiming for how I was before, I was commuting for work and juggling everything badly. I can't even work now. I just want to be able to do normal stuff - like a day out with my family or meeting a friend, or going on holiday (even just in this country). So 70 would do me for now!

I have seen someone about ehlers danlos yes. They didn't think I met enough criteria for hyper mobile EDS and they tested me for the other variations of EDS where there are genetic markers. So I don't have any of the versions that are found on genetic testing. I always seem to not quite meet criteria for things - he said probably some kind of non-specific connective tissue thing but that's as far as it went (this was by letter so I couldn't ask what it might be if not the ones he tested for).

Connective tissue disorders are often linked to autism and ADHD. Is burnout a possibility? It.can be physically and mentally exhausting.

I struggled, literally for years with 'pist-viral fatigue' as diagnosed by my GP. For several years prior to that I had suffered from eczema along with many other symptoms. Getting to the bottom of it all was almost impossible, I started cutting dairy out of my diet and things improved for a while. Then I decided to cut out wheat. Then I went to the GP again, saw a different doctor, who referred me for allergy testing. And although it hasn't all been plain sailing since then, I feel much healthier without several foods and environmental items in my life.

Thanks @sunshine244
My DD has ADHD but I don't think I would meet the criteria, I have never sought assessment. All the things that could be due to ADHD for me could also be due to brain fog or anxiety or peri menopause etc. I have wondered but not enough to seek assessment. I think I was heading for life burnout when covid hit, I had planned a career break which was due to start late 2020 as I could feel my then pace of life wasn't sustainable.

Thanks @Pearlstillsinging
For years I have avoided most dairy except cheese as milk, yogurt, ice cream etc seem to unsettled my stomach. But with histamine issues I need to cut out most cheese so now I am really missing cheese and eating very little dairy. No difference so far. I have tried cutting gluten previously but it left me very hungry! I am so slim already I can't afford to lose weight. So I am trying to eat less gluten but can't cut it completely without having a personal chef on call 😬

Glad things have improved for you x

I have very similar issues and have many diagnoses including potentially ED
The only thing that has helped at all is a very strict FODMAP diet - I went GF 15 years ago and dairy free 2 years ago
It’s rubbish but worth it as my exhaustion is nowhere near as bad and on a good day I can walk much better
I never eat takeaways though and can only eat out where I know and trust their ingredients list, allergens and no cross contamination which is not often sadly

Have you been referred to a local Long Covid clinic or ME/CFS service? If not, you need to ask your GP to refer. They won't give you a magic solution but they will offer therapeutic support with activity management.
Also, there are some helpful videos on managing LC Long COVID educational videos - YouTube and podcast by Dr. Tim Robinson who is a GP in a Long Covid clinic in Bristol Long Covid Doctor
As far as therapy, your local IAPT should have "coping with chronic illness" group. You can self-refer and waiting times for groups are much better than those for individual therapy.

I have similar issues as well as some more serious stuff.

I have not found any useful support from the nhs.

working out what triggers your digestive issues is largely left up to you. Some GPs will refer you to CBT/pacing teaching services for fatigue etc but they’ll teach you basic concepts around pacing and then stop.

I see consultants occasionally and it’s usually along the lines of oh, you have got a lot of complicated diagnoses haven’t you, I haven’t heard of most of them. As you can imagine if they’ve not heard of them they don’t have much to offer.

As your digestive issues are a major problem, maybe try consulting with a fully qualified dietitian who could advise on your diet.
Not sure if this would be available on the NHS though. You might need to go private.

OP I have been dealing with some of this for the past year.
I was in agony with Polymyalgia rheumatica and last Christmas the whole histamine thing kicked off.
I always ate well as I am a good cook but had a sweet tooth.
Through all my reading I hsve learned that most of these things are totally gut based.

So I cut back on sugar by 90%.
Since the histamine issues I cut out gluten too and the improvement is great.
I need to reduce my dairy more, i love cheese.

I definitely feel so much better but I do miss eating the food i loved.

Kinesiology has been very helpful for rebalancing.

I have half a teaspoon of bicarbonate of soda and a squirt of lemon in a glass of warm water first thing in the morning, 3 times a week, to reduce inflammation and I feel it has helped me.

I drink green tea too.
I really think gluten is a no no, even though I was only eating sour dough.

Read up on healing your gut, it being leaky is what has caused this due often to stress apparently.
I definitely was desperately stressed before this kicked off for me.

I have really tried to address that as best I can.

Be kind to yourself and make yourself your priority and you can heal.

I have several friends who were broken from autoimmune diseases and by making their health a priority they have turned things around.

Have you looked into functional medicine? It's like holistic medicine - considering your whole body and especially diet - but evidence based. I did a very quick look into it for my chronic issues but didn't pursue it further, so can't really recommend. UCLH has a department that you can see privately (and presumably on the NHS, no idea how hard it it to get a referral).

Thanks for all the suggestions.

Thanks @JaceLancs I have previously tried low fodmaps with no noticeable difference. Annoyingly I think low fodmaps and low histamine aren't that well aligned so maybe I need to look at them together and see what I can do! Glad it has helped you, I don't know anyone who has properly tried low fodmaps so it's good to know it can work!

Thanks @Catza I was referred to the long covid service during the depths of covid but it was just a remote consultation and they didn't tell me anything I hadn't already tried. They were sympathetic but basically said we can't offer you anything. My GP is meant to be referring me to a tertiary chronic fatigue service (he said this last December) but I now find out 8 months later than he can't refer me because my ferritin is too low. I can't tolerate the ferrous fumarate tablets so he was going to try to get me an iron infusion but he didn't or couldn't. He has said again he will refer me for one so will see.

Thanks @Octavia64 that sounds frustrating, sorry you have various health issues too. It really feels like we need a whole other part of the health service that can get to grips with both illness prevention and management of chronic health conditions. All I get told is what is NOT wrong with me.

Thanks @LeavesOnTrees
I have seen an NHS dietician and that wasn't at all helpful, such basic advice. I have also paid privately twice for different nutritionists and research etc. but they both ended up sending me down unhelpful rabbit holes. Neither seemed to have tailored enough advice for my specific situation or they came up with unmanageable (and expensive) plans that involved highly complex dietary changes with expensive supplements that gave side effects. I think part of my problem is there are four us including 2 kids that I need to feed, so we end up with multiple different meals which I don't have the energy to cook and DH (who is doing everything else plus working full time) doesn't have the time to cook. But perhaps I need to try one more time, third time lucky! It's so expensive, especially when I am not working 😬

Thanks @Curleywoo sorry you have had issues too. I will really struggle with no gluten (especially weight wise) but perhaps I should give it another go for a few months and see whether it helps. Sugar I know is a problem for me but I am finding it so hard to cut it down as much as you have. I can't deprive the kids of all the stuff they love (though it would be good for them to cut down too no doubt!) so it's in the house. Perhaps it's my will power I need to work on! I have tried to make myself a priority but I haven't done it well enough. I feel guilty enough that the kids have had such a crap time with me not being a part of anything fun I don't want to also stop them doing activities or having friends over or anything else that they enjoy, so I can't fully prioritise myself as I have to get them places and host sleepovers etc. I think I am just totally rubbish at using the free time I do have (when they are at school) to do the right things. Mainly because after the morning rush and before the evening rush I need to rest.

I know there is no magic bullet and I need to put in the hard work but it seems much harder while the kids still need me and life outside the house carries on as normal. The kids aren't even little, but they need more emotional support than when little, and they need getting places much more than when they were little!

I appreciate all the replies, there are some helpful things for me to look into and others for me to revisit x

Something that I believe has helped me hugely was a high dose of vitamin d3 and k2.
Magnesium and zinc. A vitamin B complex and Ashwagandha.

The above has given me a huge lift and I haven't been ill since I started taking them. No colds, flu, chest infections....which I was prone to.

Thanks @Flizzy it's something I have looked into when trying nutrition support. It's so expensive, I didn't know there might be an option on the NHS. I tried a private GP who knows a bit about this stuff but even a 30 mins appointment isn't enough to cover things. I think I am going to have to look at using much needed savings for some of this stuff as it doesn't sound like anyone has had much NHS support

Thanks @Curleywoo I was found in December to be significantly deficient in vitamin D so had a high dose over 6 weeks to bring it up. I now take a maintenance dose. I don't think it has K2 so I will try a combi one. My levels have definitely come up to within normal range though.

I previously tried magnesium, I will try that again. I have just bought zinc as I took that a few years back. Never tried ashwaganda, I will look into it. Thanks

The ferrous fumarate is fucking brutal I tried it about three weeks ago because my latest bloods showed iron deficiency.

i am not just about managing to tolerate Spatone taken with a meal. It’s only a third of the recommended rda for iron but I’m hoping every little helps

https://www.uclh.nhs.uk/our-services/our-hospitals/royal-london-hospital-integrated-medicine

This is what I was referring to, but Google AI suggested it might be the only NHS one in the country.
My issues are different, but I managed to largely recover from mine though CBT, but that was having seen a gazillion different providers of all different things, and continuing to do so, privately and NHS. It's hard.

@Octavia64 I have some spatone in the cupboard, I just about tolerate that but it's so slow! I have bought an iron spray to try, and some iron bisglycinate but my gut is such a mess I haven't yet tried it!

Thanks @Flizzy I will look into whether they take from out of area. Glad CBT has helped you, I haven't found it much help in the past, but maybe I was doing it wrong!

Have you had a colonoscopy to check for bowel issues that could be behind the gut problems?

Hi @Covidwoes I had one just over 5 years ago. I think I need one again now though, as things are much worse. This is the referral the GP said he would make but hasn't done so (I saw him 2 weeks ago and when I followed up on Friday, having heard nothing and chased once already) they said I have to call again Monday and make yet another appointment to ask him again... I am a bit worried something nasty might have developed in the intervening 5 years as things have changed for the worse 😬 Whether I can actually manage the awful bowel prep (my energy has been absolutely rock bottom) is another thing ...

Can you ask for a scan instead?

Anemia makes you feel bloody dreadful.

Spatone or Floradix in orange juice get your iron levels up faster than just by themselves.

Late to this, have you had any motility tests or gastric emptying studies, if you have connective tissue issues then your intestine motility can be slow and cause all kinds of digestive issues

The only way to manage fatigue based illness is acceptance and adjusting your life really.
It sucks, but you get worse if you don't.
Gut issues can be part of it. Try low fodmap first of all, it worked fantastically for me.
It's just one of those crap things that medicine doesn't really seem to care to treat or cure, because we don't (often) die of it.
Good luck op

Sorry just saw low fodmap didnt work, in that case don't cut anything out of your diet. You need carbs for energy when you have this kind of illness. A balanced diet and enough food.

Push for the iron infusion but apart from that don't wear yourself out trying a million other things unless you have a diagnosable thing to treat like your vit d deficiency.

I did that for years and all it does is wear you out, I'm much better off adapting my life and living with it.

Have you seen a rheumatologist? If you have mixed connective tissue disease it can be a combination of multiple auto immune diseases, some of which can have gastro effects. It is quite uncommon & you need a good one to help you.
A full auto immune blood panel would be a good place to start.

Covid & the vaccines caused a big increase in auto immune diseases & I think the NHS is still struggling to catch up.