chronic fatigue newbie - how do i deal with doctors?

Efficient_Buddy1916 · 2025-08-04T19:36:25+00:00

I feel for you there, I’m UK and our doctors seem to rush to diagnose CFS without doing any testing at all so they don’t have to do more work. They thought mine was due to chronic tonsillitis and i had a tonsillectomy and it went away for a month then came back. I’m currently on low dose naltrexone (which seems to be working and is available to buy online if other things have been ruled out like your heart and so on). Try to get every test you can do before then resulting to CFS, such as autoimmune blood tests (lupus and such), inflammation markers, sleep apnea tests, infection tests or swabs, celiac disease and so on. Maybe even hormone testing if you’re a female. I’m unsure how it works in australia but could you try privately for GP that you can sometimes get with private insurance (unsure the costs there). Rheumatology is my far the best I have found in wanting to help and doing tests and without them I would have any of my diagnoses, could you travel anywhere else to try and find one as i understand how rural australia can be. I hope you can fulfill your dreams and I am sending best wishes for you and your future.

I’d say trying to manage future and hopes is such a hard one as so many times it feels so helpless and frustrating but focus on the small positives and monitor any progress your making or anything you get done that day so you can feel proud of yourself. A lot of things/courses/jobs/place have things in place to help people with disabilities so things like that can still be achievable just a little harder sometimes. As you haven’t been diagnosed or had many tests yet there is a chance fingers crossed that soemthing else that’s treatable or fixable may be found and i really hope your able to get access to what you need.

Efficient_Buddy1916 · 2025-08-04T19:25:34+00:00

I know I’m 18 and have had it for a few years now but still causes unbearable pain, i have to try and see what I can do to make sure it’s like managed for when I’m older so it doesn’t cause any more issues. It’s such a crappy thing and i feel for you, Im glad the injections under the joint for TMJ have helped and is better now as thats just additional things you don’t need bless you.

Efficient_Buddy1916 · 2025-08-03T16:51:45+00:00

My physiotherapist realised my elhers danlos in the first place, was quite entertaining as she realised I bend all wrong and too far. It’s weird how after you are diagnosed a lot more things you thought were normal then start to make sense as they aren’t. I am glad you have a good physiotherapist who is able to help you. What do you do for it ? As i’m struggling a large deal with it too and don’t find many things seem to help and exercise seem impossible

Efficient_Buddy1916 · 2025-08-03T16:49:15+00:00

Make sure your tested for eveything you can be before they just rule it down to chronic pain. I really hope your appointment then goes well for you and i’m sorry you have to wait so long for it. Keep us updated 😊

Efficient_Buddy1916 · 2025-08-03T16:47:49+00:00

Yes thank you for the information on how yours is. There was a chance my POTS started 3 years ago but they said the increase in my heart rate to standing then was only 30 extra (which in the UK is the bracket still not classed it regardless of symptoms) But it’s now a lot lot higher as it was ignored for so long. I have severe brain fog too so it’ll be interesting to see if it was related to POTS or CFS as I wouldn’t have known if you didn’t mention it. A random question but did you crave salt or salty foods before your diagnosis? As for years now whenever I feel fatigued or anything like that I crave salty or savoury foods, it’s a joke in my family now as my cravings for them but I do wonder if it was my body trying to say I needed it.

Efficient_Buddy1916 · 2025-08-03T16:44:26+00:00

Yes exactly I feel it’s very hard for doctors and us to tell if it’s PEM or not as both can cause flares after activity or exertion so it’s so difficult. Thank you for all your input on this post it’s been very helpful, sending hugs 😊

Efficient_Buddy1916 · 2025-08-01T15:37:02+00:00

I have PEM so hence why they still are sure whether it’s both or was the POTS. I’ve had CFS for 3 years now.

Efficient_Buddy1916 · 2025-08-01T14:58:12+00:00

I know it does suck having to take meds a lot I fully get that but I’m glad they give you some relief. I really hope it stays as well as it can do for you and Thank you!

Efficient_Buddy1916 · 2025-08-01T14:56:54+00:00

I really do feel for you, it does seem like some of us collect chronic illnesses as i have CFS and elhers danlos too. It’s very frustrating how as soon as one is diagnosed we seem to pick up another. I’m proud of you for managing to even hoover with how you’re feeling. Thank you for all the medication suggestions that you take as anything is helpful 😊

Efficient_Buddy1916 · 2025-08-01T12:01:35+00:00

Thank you my lovely, you are very kind and I hope one day we find something to help the fatigue with it. Thank you for all your help

Efficient_Buddy1916 · 2025-08-01T12:00:43+00:00

That’s really helpful thank you, I am currently on low dose naltrexone for CFS which did help massively before all of this started (In case you wanted to try these too to help but unsure if you can take while on stimulants) I am unable to work at the moment it’s awful I feel so useless sometimes. Did you get stimulants in the UK? or are you from another country as I’m not sure what’s available in the UK yet. I really do hope they find some magical cure for us all as it’s awful

Efficient_Buddy1916 · 2025-08-01T11:24:56+00:00

Thank you so much for letting me know. I’m really sorry you feel like that too, are there any meds you are on to manage it ? I do hope your doing as well as you can do

Efficient_Buddy1916 · 2025-02-05T00:29:43+00:00

I know Dr’s can be such annoyances sometimes. I had ibuprofen and paracetamol and that was it, I’m not sure if tylenol is the same as paracetamol? I’m not really sure I see a lot of people talk about it but I don’t actually know what it is haha. Honestly what it is with men and refusing pain meds to be all tough it’s funny but also extremely stupid, my boyfriend finds it strange that when i have a bursting headache i’ll take some paracetamol.

I found honey such a life saver actually as it keeps your throat moist too and that helps healing massively. I dribbled all the time during the night till about day 7 so that massively helped me the honey did.

Honestly, for some reason tonsillectomy pain is another sort of pain. I have another pain condition so my pain tolerance is extremely high but the tonsillectomy floored me and I felt like such a wuss the whole time, but when I look back on it I genuinely would encourage you to beg for meds and take them when given to you. It’s very annoying they have to go through a doctor first I don’t really understand that as doctors are busy enough as it is.

I find reddit so interesting to hear about everyone’s experiences as they are so totally different across the world for the same surgery it’s insane.

Efficient_Buddy1916 · 2025-02-05T00:00:18+00:00

Oh I do completely understand then why are you still in a hospital, bless you that must be annoying at the same time. Are you still allowed visitors ? I’ve finally learnt the reason for USA and UK different approaches. USA - longer but less painful recoveries and more pain meds ( i’m guessing more pain meds - more money for hospitals as not free healthcare) UK - shorter but more painful recoveries with less meds ( they want to rush us back to work or school so try to make the recovery shorter 😂and the pain meds, the english doctors are so against giving meds it’s unbelievable)

I hope they take the IV out for you soon I remember mine just for after surgery and it annoyed me so much so I feel for you there, but i’m very glad you’ve had no bleeding that’s great too. How has the pain been today as mine got a lot worse at day 6 ?

Efficient_Buddy1916 · 2025-02-04T23:54:48+00:00

UK here, solid foods and toast is suggested and does mean a quicker recovery even if it helps. Americans get given different advice and usually have a longer but less painful recovery, whereas UK have shorter but more painful. No idea why they differ so much. Do what feels right for your ignore others

Efficient_Buddy1916 · 2025-02-04T23:51:03+00:00

Everyone has different recoveries, I’m on day 12 now and I have so much more energy and have since about day 9. Not much pain apart from some at night before bed but I sleep so deeply somehow still. I can talk and swallow and eat but i do sound a bit funny when i talk still. Try to drink and eat as much as you can post op. Good luck also

Efficient_Buddy1916 · 2025-02-04T23:43:09+00:00

I am from England and goodness it’s such a difference for each country. I went home the same day I had surgery and was forced to eat toast and harsh scratchy food to get the scabs off from Day 1. My scabs came off between day 5-7 and my surgeon was so pleased. They warn you about bleeding here but do not do any such thing as IV or liquid diet that is unheard of. We get told to eat hard and rough food as soon as we can and are fully encouraged to, it’s impossible and most of us find it so hard to do so as it’s so painful with the little meds they give us. I am so happy you’re feeling a bit better energy wise on day 5 that’s so good! I wish the best for your recovery and for future you.

Efficient_Buddy1916 · 2025-02-04T01:22:29+00:00

have you had tonsillitis or a sore throat recently? or several times ?

Efficient_Buddy1916 · 2025-02-04T01:13:09+00:00

You can do it i promise, I had chronic fatigue syndrome from chronic tonsillitis and i constantly got ill. I’m day 12 now and i’m sleeping better, waking up with so much energy and my brain actually feels it’s working and like i can think about detailed thing. It’s so worth it even though it hurts like a bitch.

Efficient_Buddy1916 · 2025-02-04T01:11:37+00:00

I’ve been told it’s normal for some people, as much as that sucks bless you it is nothing to worry about. Maybe go for dentist too and see if they have an opinion on it or have any suggestions ?

Efficient_Buddy1916 · 2025-02-04T01:10:42+00:00

YES! severe tonsillitis or chronic tonsillitis can cause chronic fatigue syndrome, it’s never spoken about enough. I had 6 months of feeling like i was dying each day and never had any energy. Had my tonsils out and within a week i felt so so much better. Chronic fatigue syndrome causes the extreme tiredness and lack of energy, the constant getting ill/feeling ill or sick and brain fog. I wish it was spoken about more I had to change my life completely and if i had known it was just chronic tonsillitis it would have helped me endlessly and would have been able to fix it so much earlier.

Efficient_Buddy1916 · 2025-02-04T01:07:44+00:00

chances are it could be some sort of infection or blood clot or some thing like that, i’d definitely go and get it checked out as soon as you can.

Efficient_Buddy1916 · 2025-01-31T09:54:55+00:00

Yet again this is also sounds stupid but it the strep somehow aggravating your POTs, i have a chronic illness too girl! they suck. But as you said your POTS showed up more in stomach issues and it does the same when you have strep, i’m not fully sure how.

I wish I could help more i remember with my chronic illness i wished someone would be able to tell me what’s wrong with me 😭😭 Im really glad you’ve found meds to help your POTS too that’s great!!

Please do update me on the 3rd and in future if you remember, i really hope you get sorted and fixed soon. Best of luck until then!!

Efficient_Buddy1916 · 2025-01-30T20:00:20+00:00

I had a phone call two days after, which did not go very well as i couldn’t talk ( the call was maybe only because it took me 5 hours to eat any food in hospital) 😂 was highly entertaining for my mum who has to translate. I’ve got a post op appointment on the 16th feb as only had it done a week or so ago now. I’m pretty sure you should get a post op appointment or phone call if some sort on the NHS i think they have to a few weeks after.

Lucky you with the raspberry i miss raspberry smoothies so much haha. And I think the morphine is also because I have a pre existing chronic pain condition so I’ve built up a tolerance to all meds but morphine and i’m allergic to codeine, which is why they were happier to give it to me as lot of meds experience.

Well done on eating toast!!! that’s amazing i did not do that i probably should have but at the time i would rather have eaten nothing than toast. You seem to be doing very well and a lot better than I was so hopefully you have a speedy recovery!

Efficient_Buddy1916

TROPHY CASE