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Hi everyone, first post here as I try to do some research on behalf of my dad.
For the last 10 years or so, my dad (late 60s) has suffered with debilitating episodes of flu like symptoms and extreme tiredness. Typically lasting 1, 2 or even into 3 weeks. The flu symptoms are typically quite mild (cough, soar through, head aches); however, the extreme tiredness is very debilitating. Restricting him to bed for most of the day. A short walk to the shop meaning he needs to sleep for the rest of the day. In between the episodes there have been quite long periods where he hasn't seemed to be affected.
The consensus initially was that it was being caused by an underlying virus or infection. GPs have issued many courses of antibiotics and specialists have done all the test for rare/tropical viruses etc. For a time an improvement was seen using a saline nasal nasal douche - I believe suggesting an underlying infection in the sinuses? However, after a period of wellness the regular boughs have returned. With him most recently being pretty much bed ridden for around 3 weeks.
Reason for posting here is that we seem to have reached a point where the doctors have run out of ideas. There's no more tests to do and no treatments to suggest. I don't have first had experience of CFS and I read that it typically affects people at a younger age; however, I wanted to see if others have experienced similar symptoms coming later in life and periodically.
I may be way off the mark here, but just looking for anything to give my dad (and mum) a path forward. Great to see this forum for people to share and all the best to everyone.
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Have a read through this and see what you think: http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/
PEM or Post Exertional Malaise is the symptom mostly commonly associated with ME/CFS and it was thought that without this, it wasn't CFS. Not sure if this still stands but it is still the most common symptom among sufferers.
I will definitely go further with that now.
Hi, it's great that your dad has you to do some research on his behalf,
Statistics can be misleading, and CFS statistics especially, as this illness is sometimes misdiagnosed or missed entirely because of the varying nature of symptoms and the fact that some doctors listen more than others ( as there is no known diagnostic tool yet).
It's true younger people can be diagnosed with CFS/ME and also that they (statistically!) can go on to have a better chance of "recovery" .... whether that be due to the inate resilience of youthful bodies or not is still to be established.
Statistics apart, there are many older (50+) people who have CFS/ME to varying degrees and how they manage it and live with it also varies.
I can only tell you about myself, now 65, I had a very bad flu-like illness which laid me low and off work for a month at the age of 56.
I returned to a very stressful job while still suffering the effects of the illness, sore throat, swollen glands, extreme tiredness, aches. I put it down to taking a while to shake it all off and threw myself back into work.
After a week I was worse and was losing my voice. In short I saw my GP again and between tests for this that and the other I was signed off for a whole year, in which time, amongst other things, I had to go to voice therapy to recover my speech.
The final result is now nine years later and after a long haul road of losing my job, huge financial implications, etc. I find myself at retirement age and managing an illness that does not respect age, intelligence or previous good health.
CFS/ME can hit anyone at any age and from any background.
Yes, it seems it can, at the start, target people who work under stressful conditions (who doesn't nowadays?) or in fact those who have just relaxed after a stressful time.... could that be your dad's case? Had he just retired after leading a very busy working life?
CFS/ME takes getting used to but once you know the nature of the beast the only way for most of us to manage is by realising that the amount of available energy is finite and that we have to conserve and measure out the things we can and can't do.
Pacing works for me generally, however there are times when I exceed the amount I know I can do or, as often can happen, the things I could do yesterday I cannot do today without "payback" in the form of intense aching body and feeling I'm falling into a dark pit....I just go to bed, sleep ( if it isn't one of the times that my sleep is disrupted so much that I go 36 hrs feeling ill but cannot rest and sleep).
Variable is the nature of CFS.
So, to get back to your dad, he could well have CFS from the things you describe. The early months/years can be the worst in my experience as after that you learn to listen to your body. Your dad will start to realise the things he can/cannot do and the family will also learn to have the patience to adjust their expectations and support him when he says "no" to an invitation or a family outing.
Sometimes he will decide to join in knowing fullwell the consequences he will have in store, the balance is the tradeoff between wanting to participate and feeling ill.
CFS/ME is something you learn to manage. Read all you can from all sources, talk about how he feels, combat the guilt he will feel at no longer being the active strong man he should be, and support him and your mum all the way.
It can get better. It can get to the point of feeling you are in charge of yourself again.
Good luck, he'll be all the better for having your backup.
The doctors often get to this position of not being able to go further with diagnosis and my own doctor was happy for us to explore CFS/ME. You can be referred to a specialist clinic if within the UK.
The clinic can help your dad to pace and rest so that he isn't having the huge crashes he seems to be having at present. CFS/ME doesn't just affect the individual, as you can vouch for and so it is important that you also ask for advice and help from them.
I hope this helps.
Hello, newbie here.
I was diagnosed with ME thirty years ago. I am now 73 and have the same symptoms again, along with the headaches and sore throats when it flares up. I didn't have those last time which makes my doctors think more along the lines of a virus infection.
I'm not sure if others with ME get a sore throat too on here but would appreciate some feedback.
I haven't had a full diagnosis yet, but for what it's worth, I managed to recover last time, after six months by 'banking' my energy...and storing it up over a period of time instead of overdoing things when I felt well.
Some call it pacing on here, so it's worth a search.
Best of luck to you and your Dad.
Like most conditions, there are individual differences but, lots of common strands like tinnitus, sinus issues, swallowing, heat/cold issues, sore throat, breathing problems, chest pain, numbness, throbbing, twitching, palpitations, memory loss, brain fog, sleep issues etc.
My friend with CFS/ME has terrible chest pain, throat issues and sinus problems. I have CFS/ME too but, do not suffer as they do with these as greatly asvthey do. They don't get my walking problem or have as many accidents with falling/stumbling/walking into things as much. But we both get the brain fog and struggle to talk sometimes to I would say the same degree. We both end up house bound with no energy etc.
Hope that helps somehow
My symptoms came on directly after a car crash and I was already on a wheat and dairy free diet prior to that. I do wonder if gluten is OK as I don't get the same reaction as I do with wheat and milk. Most vof my products are gluten free as a side issue. My CFS/ME symptoms tend to show with over excursion. I eat oats which is really my only source of gluten nowadays. I know chilli gives me a reaction if I eat too much of that so I keep my eye on this. I believe my issue is with the protein in the wheat and milk? I cannot eat spelt products or other mammalian milk products either. At present I am eating as much organic food as possible to see if this helps my system. I eat oatcakes as these have a slow release of energy but didn't have them for several months.
How was your issue identified? I also ended up with IBS symptoms after the incident. My whole system changed because of this event!
I find it fascinating that there are a great number of conditions that cause these symptoms. Many people have asked if I've been tested for Lyme's, I think I would have been incredibly unlucky to have been in the crash and bitten by as tick on the same day! I literally woke up with these symptoms the day after. It took eighteen months for me to ask if it could be CFS/ME and this was due to my friend getting PVS and getting a referral to the CFS/ME clinic.
I have seen many doctors over the years. I grew steadily worse and had become almost housebound. I had become resigned to the situation but my daughter pressed me to see yet another doctor. My symptoms varied almost daily. I wrote everything down in stages from one to six. One being a good day and six being when I could not speak or walk. This new doctor simply said go on a strict gluten free diet. This is very strict. Meaning that I check every produce I buy and don't but things that can be contaminated such as soy. It is very difficult to track reactions but have found that if I eat gluten accidently it is the morning of the second day that I am unable to get out of bed unaided. After diagnosis I googled and found that my symptoms did in fact fit gluten ataxia. I have got my life back.
My problems started after I had been hospitalized with sepsis. It is my belief that all the drugs I was given caused my problem but thats my own private thought. Nothing to prove it.
If you live in the U.K. try looking at research being done at Sheffield hospital. Good luck.
Yes I do live in the UK so will check it out.
This is interesting.
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My heart goes out to CFS/ME sufferers. I admit I'm biased but I can't help noticing all of the symptom similarities with hypothyroidism. As a person ages, their pituitary is less responsive to TRH, meaning that if the doctor only tested TSH it most likely would appear normal despite low cellular T3 (FT3) or a transient stress response that lowers T4 to T3 conversion (non-thyroidal illness). Either way, it's certainly possible that he's having trouble recovering from chronic sinusitis. Immunologists now recommend a three week course of antibiotics, since they do not penetrate the sinuses well; nasal irrigation is always helpful.
I am now 60ys old but have had ME for 21yrs . I had to take ill health retirement from nursing. I personally know and often come across other nurses in the same position due to ME.
My symptoms ,which are many from the CFS/ME list, and I also have fibromyalgia, have exacerbated over the years. I don't have any periods of improvement or feeling better. No good days , but some days really bad. I am housebound . I try to pace but not in easy.
Sorry to hear about your dad's ill health. He may have been checked for it , but has he been tested for Lyme's disease ? The symptoms are very much like CFs/ ME infact some who have been diagnosed with ME are discovered to have Lyme's.
Also have vitamin d levels been checked . ? Have conditions such as Addison's been ruled out too. cFS/ME is an umbrella diagnosis usually when most other things have been ruled out. Does your dad have any cognitive problems? It is another major symptom for many with CFS/ME. It certainly is for me.
I do hope some answers can be offered soon for your dad . take care x
My ME resulted after winter vomiting quickly followed by four throat and chest infections. I just became weaker and weaker trying to work through it then just about collapsed at work. Tried three times o return. Thanks after a year off sick had to take ill health retirement age 39.
I have gluten , wheat and cow's milk intolerance.
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