I'm 40, and for the last 18 months or so, I've been suffering from severe exhaustion. I've been stuck in this zombie-like state, living barely half a life, and it's wearing me down so much, I honestly don't know how much longer I can take it.
Just over a year ago I went to the doctors because I snore heavily and my partner had been saying that I make a lot of choking noises in my sleep. I'd been waking up gasping for air a few times each night too.
I was referred to the sleep clinic and eventually, after years and sleep studies, diagnosed with sleep apnoea. I had a CPAP machine, but it made no difference at all to my energy levels. I would still wake feeling more tired than before I went to bed. Eventually the sleep consultant decided that the apnoea wasn't the root cause of my fatigue, so she's taken the CPAP back and has referred me to a endocrine specialist. My blood tests were showing that I had plenty of the hormone thyroxine, but none of the hormone that produces the thyroxine, so she suspects a possible immunodeficiency issue (which is something a sibling suffers with, as well as sleep apnoea). I'm still waiting for the referral to come through.
In the meantime, I'm still exhausted. I work full time (my boss is very understanding if I need to come in late etc), but I find I have to sleep pretty much all day Saturday just to get over the effort of working all week. I used to have a social life. Now I just have my bed. I was told not to drive almost a year ago, because I'm so exhausted and fell asleep at the wheel a fee years ago, so I haven't driven for a year, and between walking and buses everything takes longer so wears me out more.
My muscles ache - particularly my left shoulder at the moment. My nose is always stuffy, and I have a sore throat more often than not. I have a lot of headaches, and my occasional migraines are now at a much more regular 1 every 2 months or so. I currently take the antidepressant citalipram (30mg) as have suffered from depression since I was a teen. I also take a WellWoman multivitamin every morning, along with an iron supplement daily.
This week I've started a major detox, in the slim hope that something I'm eating is causing this, so right now I'm just eating fruit, veg, a little white meat and fish, and oats with almond milk for breakfast. My plan is to see if I feel any different after two weeks, then assess it from there.
I suffer with bruxism too (grinding my teeth in my sleep), and am finally going to the TMJ clinic next week after 18 months of rearranged appointments.
Does any of this sound familiar to anyone? Or is there anything else I should be trying? I just feel like a waste of a person right now. My partner has been great, he grumbles, but still manages to do all the chores even though he works a lot of hours, as after work it's all I can do to eat before I fall asleep.
Any advice anyone could give me would be greatly appreciated.
Hi poor you , I suffer from sleep apnoea and like you went on for years the cpap machine helped me in fact as I now reach rem sleep stage it is fair to say it has changed my life,however and I should stress I am not a doctor from what you say it sounds to me that as well as sleep apnoea you display all the symptoms of ME or CFS. My wife has M.E. and you sound like you are telling me her symptoms. I really hope you get the help you need soon. In our experience a lot of G.P.s still don't understand me/cfs and want to treat it as a mental disorder(and want to give anti depressants for) which it is not, according to the world health organisation, the NHS are acting upon the advice of a one discredited report 're these conditions. A matter that has now been raised by a MSP in Westminster . Perhaps it would help if you did your own research in this area.
I had ME 10 years ago medically there's nothing they could do for me. I went to a herbalist and was put on a very strict diet of no sugars or carbs just a diet of high protein and I slowly got better. it took a full two years but I've never looked back. Try follow a gluten free diet this also really helps
Hi! I empathize with you. You certainly appear to have the symptoms of CFS/m.e That's bad enough without sleep apnoea!! Have you had your big D and b12 tested? A good elimination diet can be just lamb and pears X 10 days then gradually reintroduce gentle foods eg rice pudding done in the oven.eggs etc and see if you react to anything. Try dairy free products goat/ hemp/ coconut milk are good. Gluten free and sugar free using stevia.nothing with aspartame in it though. Supplements that may help are omega 3&6, CQ10 300 mg magnesium ( simply supplements do a good price) and a high strength probiotic ( healthspan are good here) Maybe you could read Sara myhills book on chronic fatigue syndrome mitochondria not hypochondria which will give you further advice.
Should you need time off work I suggest you try get a mitochondria function test done which will indicate the amount of energy you have in comparison to the normal range. This will give you the proof that you need that you are actually physically ill to claim relevant benefits. ESA/PIP. Really hope it doesn't come to this though!!!
Having been bedridden nearly 5 years. I understand the way CFS takes away your life and leaves you with an existence!! Try to pace yourself so you don't expend too much energy and then crash (which appears to be happening with work). Rest when able. Do what you can and leave the rest. Good on your husband for his help and support. Hope he'll read the book too so he has more understanding of CFS and the impact it has on your life.
Good luck. Stay strong. Keep on keeping on. And if I can be of any help please say.
Hello @LittleMissW I am shocked that the sleep clinic took backed the CPAP machine. As I was reading your post I was thinking 🤔 she has sleep apnea then read that you were diagnosed with sleep apnea but then read they took the CPAP! Just because you still are exhausted doesn’t mean you don’t have sleep apnea. It just means you have something else going on. The immune deficiency syndrome may be the cause of your exhaustion but the fact you are still able to work full time is great. I had to give up the ghost on working because of fibromyalgia fog, fatigue and pain. You have ME do you have fibromyalgia too? Does your oxygen level drop while you are asleep? Mine does but really don’t know why? 🤔...I had a friend who would say “I ran out of words” when his thought process stopped. Mine just stopped. Well sorry I wasn’t of more help. I feel your frustration I have been dealing with this for 25yrs years. I have tried so many things over the years in hopes of a cure. I just haven’t found it yet. 😒 I pray for everyone suffering from chronic illnesses. Oh your sore throat is a symptom of CFS/ME. Hugs 🤗💕🦋
So sorry to hear what you are going through. I am a 34 year old female. I was diagnosed with ME when I was 17-20. I am very lucky that I got over it .
Your symptoms sound very similar to mine. I was told by medical doctors that I wasn't ever going to work a normal job and woukd never get ober it. Medically there's nothing that they can do. How I got over it was I went to a herbalist. I was put on a strict diet ( no carbs or sugar) just protein. I list a lot of weight but slowly started to feek better. Follow a gluten free diet that can help stabilise your energy and if i were you I would look at a local herbalist. Hope I offered some help.
Try to eat healthy try to rest when your home do a bit rest a bit wish i knew a cure do keep going back to drs to see if he can find a problem or help in any way
Hi there, you are not alone, there is plenty of us.
Did you check yourself for chronicle sinusitis? Might be your case.
Anyhow, these conditions appear out of the blue but they are caused or triggered by something. Listen to your body very carefully and observe everything. Try remembering what has caused you this feeling. Invest in medical investigation, because most of the time your GP is not much interested in looking for "fake" illnesses.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. It is extremely common, especially with women.
Low vitamins are especially common with Hashimoto's. Food intolerances common too, especially gluten. So it's important to get both TPO and TG antibodies tested.
Hi all.
Thanks everyone who replied to my first post. You gave me a lot to think about.
Since then, I've been dropped from the endocrinology clinic after the synacthen test came back clear. I'm waiting to be referred to the CFS clinic, but out of desperation i started doing a lot of research into literally everything- things i do, places i go, what i consume....
I found out some pretty shocking stuff tbh. Medical journals and reports have been published with evidence that citalopram can have serious side effects such as extreme fatigue, exhaustion, memory problems and muscle/jointpain - 4 key things that have been crippling me. I also found out that I shouldn't have been taking them at night, as they increase brain activity and lead to you not getting restful sleep.
Why did no doctor or consultant ever even hint at any of this? What's more, when i told them how low i was feeling and how I'd had enough, they actually increased my dose to the maximum level, and by the sound of it, made it even worse for me.
It's not very clever, but as i was at the end of my tether i decided to stop taking them immediately. Just over 2 weeks ago i went cold turkey.
The downside is that right now I'm more emotional than i remember being in a bloody long time. Perpetually close to tears, although have managed to keep it together so far.
The upside though? Oh my word, i feel so different! It's only been 2 weeks so the drug is still in my body, but I actually feel alive! I haven't fallen asleep during the day at all. My colleagues have remarked that I'm not making them yawn anymore. I walked home from work one day last week and it didn't lay me up for the next few days. And I've just completed a 62 hour week at work, whereas i was killing myself trying to make it through my basic 40 before (and often not managing it).
It's early days so i don't know where this is going, but I'm looking forward to finding out.
Ive been on antidepressants for the best part of 28 years, so life without them is a scary concept. I've warned my family and close friends to keep an eye on me in case i go under and don't notice it happening. And I'm thinking about seeing a herbalist to get their advice about managing the depression.
Maybe I've found a way through this? A
If not, I've given myself a little break from feeling like a waste of a person. In my eyes that's pretty important.
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Newly diagnosed and confused
How do I get a diagnosis?
Cfs and full time work