Is it worth getting CFS diagnosed?
Posted , 8 users are following.
This is the 3rd autumn/winter Ive had symptoms that I'm sure are CFS (exhaustion/lethargy/feverish high temperatures, made worse by doing basic things like going to the supermarket/attending a meeting/ driving more than 10 minutes/ concentrating on computer work/going for a gentle walk). Some days good, others bad, some start well but suddenly change. Sometimes can't lift head off a cushion and tears come from nowhere.
Blood tests for I don't know what were done 18 months ago. Symptoms went away in the summer. Last year I went back to GP who thought he was being helpful by diagnosing menopause and prescribing HRT (not finished menstruating yet, and have never heard of symptoms quite like these for that). 3 months of it didn't work.
I told him I'd read up on CFS and it was like 'looking in a mirror' as so many things matched. He wouldn't listen and got pretty cross. Eventually he said 'Even if it is, what do you hope to gain by a diagnosis if there's no cure?'
I feel that if everyone undiagnosed stood up to be counted, then more might be done about it. But I can't face the energy needed to go back to see another doctor. But also, I feel like a 'fraud' for not having a diagnosis. People's understanding stops if they think you've diagnosed yourself - its not taken seriously.
Sorry - long post but so frustrated and wondering about next steps.
0 likes, 12 replies
bettybetter Dire_Straits
Posted
More than a diagnosis, I think you just need to be heard, believed and accepted.
Take these as FACTS...
Your your symptoms are awful. It's so hard to not have energy just to live your life the way you want it. Feeling this way makes life very difficult for you.
Your are not making it up, you do feel this way. No one would make this up (well, maybe if we were 8 and wanted to avoid school we would but just for one day... No one would pretend to be ill for months or years!).
I suspect that's what you need to hear from a supposedly caring professional. And getting that empathy can mean so much. I think sometimes that's what we hope for from a diagnosis ; just to be understood. This is a very, very important thing.
Finding a new doctor is tiring and you don't have energy so just focus on what you need right now, today. If you need to be understood then reach out to someone you know gets it. If there isn't a person like that in your life, then come on here (which is maybe what you've done).
If you feel one day you have a little bit of fight in you, then take some steps to find a new GP. You can break it down in stages so it's not too much. I think it does help to find a professional type who gets it. Not so they can prescribe something to 'fix' but just so they can understand. Drs are taught to practice and fix so it's not really part of their training to be that way but some can be wonderful and I think it's worthwhile having a plan to find one. Even if it's a long term plan and you need to work towards it.
I really hope you can find someone who understands.
Dire_Straits bettybetter
Posted
Thanks so much - receiving understanding - that's exactly it. I have 2 or 3 friends who do understand it because they've had it. My husband is caring but there's still this mentality of 'if the doctor hasn't said so, it's not official'.
Also, everyone with these symptoms needs to be heard so it isn't swept under the carpet. I'd happily be a statistic if it would help the Cause!
I just can't face explaining it all again, as I know a lot of these symptoms can be associated with my age, but I feel deeply that this isn't directly hormone-related. I just feel it.
And I've had depression in the past, but I know that isn't the cause of this. I have so many things I want to do and stuff that I enjoy, and feel physically unable to.. Some days I'm relatively raring to go, so I do stuff, and then... bang. That's not depression (although in itself it's depressing - not the same).
Anyway, I'm on this forum and I'll have more questions, I'm sure. Thanks for your thoughts.
victoriajane Dire_Straits
Posted
Ooooh I got riled up reading what the doctor told you! They are so often the gatekeepers to further treatment, to information and even to acceptance and understanding by those around you. Just because the medical profession doesn't have an answer about CFS, it doesn't mean they can just ignore you! At the VERY least he could have given you the NHS/NICE information brochures which go over pacing, boom and bust patterns etc. (Although I got those from occ health at work not my doctor - my doctor just told me to 'google it' if I wanted to know more... sigh.)
I do think an official diagnosis is helpful if you're able to get one - I found people were more understanding once you're 'official'. (I found convincing myself harder - I'd lie in bed for days asking myself if I wasn't just making it all up... maybe I had sudden onset laziness!!!?!)
Another advantage is that as it's a diagnosis of elimination I think it's a useful step as it means you rule out other potential problems (although, menopause? really? that's a new one on me for these symptoms!). I've known people who were diagnosed with CFS then years later found out they had fairly rare illnesses that were actually causing the problems - and they were able to get treatment. So the more you can get tested for the better I guess - if you can summon the energy for it all. For this though you need a doctor who listens and takes interest... Sounds like you may need to change docs or even practice if you can! I did, and it was the best decision I made about my illness until the new practice closed down and we all got shipped back to my previous practice! At least I know now what good looks like though! I hope it all works out for you
Dire_Straits victoriajane
Posted
Thanks for this. Well, with the menopause thing, the doc saw that I'm 51 and said I got high temperatures and couldn't concentrate. I got the impression he was very pleased with himself for being one of those enlightened GPs who prescribe HRT without a fuss, but it came as a complete shock because it had never occurred to me that that was the problem. Now, of course, I doubt myself, as you describe.
I've done lots of googling, but he didn't want to know. I try to pace myself but that means cancelling things I want or need to do. I guess I'm lucky that I work freelance from home - but this means I'm not asking for a sick note, so no-one registers how ill I feel and how little I'm actually achieving compared with normal life as it used to be.
susan556 Dire_Straits
Posted
Hi there just about to go to bed wnen i saw this. I think others have just about said everything i would have said.
Being a sufferer myself of cfs and having even relatives just not understanding is awful, get remarks from well you look ok, or no wonder your weak, you dont do enough to produce any energy. One of my sons now has this and he said mum i feel so sorry for you, i never realised.. Strange thing is he is approx the same age when i was 1st experiencing the symptoms. His dr after ruling our other things himself suggested M.E.
Why did that dr suggest the menopause when you hadn't even finished the menstruating! I agree even if you cant be 100% diagnosed just to have some empathy and a bit of concern goes a long way and i do agree you should change your gp.
Yes i get not so bad days, and better days, sometimes even putting my arms up to look through clothes in our local charity shops is making my arms throb and ache, mornings are worse for me, wake up feeling like your coming out of an anaesthetic and all my appointments need to be afternoon ones.
I was very lucky to be diagnosed by a kind rheumatoid arthritis consultant as having M.E. back then in 1997
I hope you get the right diagnoses and a kind gp, meanwhile you have us to support you!
Sue
KPD Dire_Straits
Posted
I completely understand how you feel. It's tough going from doctor to doctor when we hardly have the energy to get up in the morning and get the necessary things in a day done.
I've had CFS for 25 years and was lucky enough to find an infectious disease doctor to diagnose me at the time. The good thing about him is that he did every test under the sun to rule out autoimmune diseases that have similar symptoms. I do take an anti viral drug from time to time..not sure how much it helps. I think what helps the most is doxepin (an tricyclic anti-depressant) which helps with sleep. As you may know, sleep (REM sleep) and pacing are very helpful for sufferers of CFS/ME.
Funny you mentioned hormones, but I was doing pretty well managing my symptoms up until 5 years ago when I started going through menopause. Menopause has made my symptoms significantly worse. The hormone replacement has helped a little bit (as it improves sleep and moods) but my symptoms are still pretty bad.
The other drug I've heard about a lot is Low Dose Nalproxene). In higher doses, it is used to treat addictions, but in lower doses, it is suppose to help receive some the symptoms associated with autoimmune diseases such as lupus, CFS, etc. You may want to check into it!
Hope you end up finding a doctor who can at least support you! Good luck. KPD
julia24924 KPD
Posted
KPD julia24924
Posted
Thanks Julia! What kind of doctor did you get to prescribe it to you and what dosage did you start off with? I'm asked my infectious disease doctor about it and he wasn't too optimistic about trying it. Thanks so much for any feedback. KPD
julia24924 KPD
Posted
The private Doctor who specialises in CFS gave me LDN. My GP wouldn't give me it. Then the neurologist prescribed it for me which saved me returning to the private doctor who was expensive. My advice it to trust your instincts and anyone who is creating obstacles regarding you managing it is sadly because they are ignorant to the reality of it. There are little to no side effects from taking LDN. I stopped taking it because I felt it had run its course and because I don't pick up viruses the way I used to.
KPD julia24924
Posted
julia24924 Dire_Straits
Posted
Dear DS
It sounds like you may well have symptoms of CFS. Sad that your GP is not listening. For what it is worth I feel if you get a diagnosis, you have something to work with. It's easier to manage. You have nothing to loose by getting your suspicion confirmed. You deserve to be acknowledged . My own GP didn't listen and so I paid a private doctor who specialises in CFS to give me a diagnosis. My GP acknowledged it afterwards. The tears are just tears of frustration. I hope you find your way. 😊
abbys213 Dire_Straits
Posted
My GP did the same thing to me, and I went on for about a year before it became so bad that I HAD to find out more. She kept telling me, "So you have chronic fatigue syndrome, what are the other doctors going to do about it?". I believed this for a long time. Finally, I insisted I go to the Mayo Clinic to make sure nothing else is wrong with me. I live 2 1/2 hours away and my insurance covered it, so what did I have to lose.
It turns it that it's very nice to be officially diagnosed and to stop worrying that it's something else (health anxiety).
Though the Mayo Clinic had very little to offer me (besides their outdated "course"
, now I am looking into causes of the CFS.