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[Peri-wrecked]

Well, im back again!! So after taking a few days to absorb my recent diagnosis of Chronic Fatigue Syndrome, I am still not sure I have been diagnosed properly. I certainly am tired and worn out and I have   many symptoms of CFS but I feel everything took a turn for the worst when I came off birth control 2 years ago. I have started qlaira birth control 16 days ago so I know its still early days where that is concerned. Ive had increased fatigue and increased anxiety and low mood and tearful since I started.
I know they say give any hormones 3 months at least-I guess I was hoping for a glimmer of something to get better.  I honestly feel like im in the bodyof a 90 year old.
The doctor that diagnosed my CFS did say he thought I may also be heading for early menopause from the information that I gave him but I should discuss withmy own gp and get on hrt asap. such a disasteras my own gp is soon retiring and anxiety and depression is all over my file since this crap started and any doctor who takes over will dismissmy symptoms as at 35 im too young im sick of feeling sore and tired and not believed by others.

[CLKD]

You need to look at the Daisy web-site if you haven't already.  No one is TOO young to begin menopause regardless of what GPs believe. 

Why do you doubt your diagnosis  - go with it for now and take on board what has been advised? 

[Hurdity]

Hi Desperatedee

You are quite right to question the diagnosis of Chronic Fatigue Syndrome especially at your age and given your symptoms and history. As sparkle says the symptoms overlap and CFS is just that - a syndrome - with likely a number of causes amongst which can be - but not limited to (in women anyway): low oestrogen due to menopause or peri-menopause, low testosterone and underactive thyroid - all of which can give these symptoms. To be given this diagnosis is really a fob-off by the doctors saying we have no explanation for your symptoms. Whether there is for example an auto-immune underlying cause for CFS that is not explained by any of the other hormone upsets or anything else that can be measured - remains to be seen, but as far as I understand such a diagnosis may mean the end of tests to determine the cause, and learning to live with it ( along with Fibromyalgia and ME).

The classic sign of your being affected by decreasing oestrogen is that you started to experience your symptoms when you came off the BCP - when your artificially high levels of oestrogen would have fallen to what they would be naturally. If you are heading for an premature menopause then they would not bounce back to what they should be in someone of your age with a normal menstrual cycle.

What happened to your periods after you came off the BCP and did you take  any other hormonal preparations in those two years? If early menopause was suspected, your doctor should have taken two blood tests 4-6 weeks apart to determine FSH levels - but at least you have been given Qlaira. Now you've started this you won't get true readings of your natural hormonal state (re FSH and oestrogen). The oestrogen dose is not especially high in this one but hopefully will eventually be sufficient to lift your mood and eliminate most of your anxiety. The side effects you are experiencing could be due to the progestogen and hopefully these are temporary.

Have you had full blood tests etc to rule out other conditions before being given this diagnosis? Thyroid function for example and vitamin/iron levels  - I would presume so? However I bet they haven't tested for testosterone? If possible I would ask for a referral to an endocrinologist (if you haven't done so already) before accepting this diagnosis and/or go for a second opinion with another doctor. It may well be that the anxiety/depression you have been experiencing have a hormonal cause - in some women this occurs throughout their fertile life.

Please take my comments in the spirit in which they are intended - to be helpful - rather than minimising your debilitating symptoms, because I am querying your diagnosis and urging you to ask for further investigation.

I hope that you start to feel some benefit from the Qlaira soon and you get to the bottom of your condition - so that you can receive appropriate treatment. You are far too young to have to feel like this!

Hurdity x

[Peri-wrecked]

Ladies, thank you all for posting (I keep forgetting to tap "notify" when I post things), so sorry my response is delayed.

Firstly, I guess part of me might think its slightly possible that I may have CFS but I must say that everything did change for me when I came off control 2 years ago.  But maybe it is correct diagnosis.

I have had thyroid tests, iron, vitamin  d and vitamin b tests done but theycome back within range. I did get diagnosed with a thyroid cyst in February  after a lot of complaining from me that food was getting stuck inmy throat. However, I really started to get joint pain in the last 3 months and I track my periodsfor months and saw that it occurred around ovulation and just before a period. My periods for the first year off birth control were very very light and I really only got one day of flow and spotting for 3 days. Then the second year I had what I call a suddeb "jump start" where I bled for 2 days and then spotting lightly for 2 days, then they started changing from 28-30 days to 21-34 days.

I will definitely look into the Daisy network. I did try to get my doctor to refer me to an endocrinologist but they wont see me if my results are normal.
I used to be on yasminelle birth control before this and I will certainly look into going back on it ir on something stronger.
Thank you ladies again for taking the time to offer advice and help in this awful stage of life. I hope I xan do the same for others.
Xxxxx

[CaroleM]

Hello Dee,

I am sorry that you are feeling so rotten.  Hormones seem to 'enjoy' causing us total havoc and finding a solutions feels never ending.

An early menopause can be so cruel.  I don't know anything about Chronic Fatigue Syndrome, but I do know what an early menopause can be like.  Please love yourself, give yourself time and space to adjust.  Take care.
Brighteyes

[Hurdity]

In view of your age I would push for further tests - especially re testosterone, and as sparkle says - if your TSH is at the high end of normal you could still experience symptoms. Do you have problems with weight or feeling cold?

Also yes - if the Qlaira does not work after trying for 3 months then definitely see about going back onto one of the stronger BCP types as before and see if that helps your symptoms.

Hurdity x

[Peri-wrecked]

Thank you very much.

My last tsh test I had was 0.93 I think but I dont see the range on it. I do get extremely cold all the time and being honest, I have always felt the cold more than the rest of my family. My mom has underactive thyroid and she is always cold too. Not as bad as me though.

It is a challenge trying to get proper diagnosis. I guess so many things have similar symptoms.

 
I will keep trying to figure it all out. Hopefully, I will start to feel better soon. Thank you all again   

[Butterfly22]

I've always struggled with hormones and after the birth of my daughter at 25 went straight into the menopause and got ME.
It did take two years to find out about the menopause and Four with the ME.
Like you it took a lot of coming to terms with as was so young.
I was so tired but kept of fighting for answers as I no my own body and something was not right.
If I can help with any info or anything please message as it's almost 19 years with both now.
Sending hugs xxx

[Wrensong]

Hi there, as there is hypothyroidism in the family & you mention diagnosis of a thyroid cyst earlier this year, I would try to make sure you see a GP who is willing to keep an eye on your thyroid.  I'd have thought an Endocrinology referral might be in order for the cyst, in spite of your recent healthy TSH & if you are worried, it might be worth pushing for this.  I'm long-term hypothyroid & know how tricky it can be to work out what is going on with symptoms that could be due to any one of thyroid/menopause/CFS or a combination.  Could you perhaps take someone along with you to the GP who can encourage them to look again at what might be going on?  You are far too young to be feeling so awful.  I do hope you manage to get some help with this.

[Peri-wrecked]

Thanks eveybody for offeeing all the advice and giving examples from your own experiences. I really appreciate that.  I really feel like like the doctors just want to label you with something and thats it. But each differebt doctor diagnoses different possibilities. I guess they all want to fit your symptoms into their area of expertise and being fair a lot of things have similar syjptoms so I can see how it works. Overall I am being offered anxiety and depression medications but I dont think that is the answer. I did try a few and they just made things a lot worse. I will give the birth control another while and hopefully they will help.
I may message again regarding people with experience of ME or thyroid issues. Thank you all very much.

[Wrensong]

You're most welcome - please do post again if there's anything we might be able to help with.

[DaisyB]

Desperatedee - sorry to hear you have been feeling so poorly. I was diagnosed with ME 9 years ago - I believe a very stressful situation at work triggered it but the weakness was there as I had contracted shingles and Ramsey Hunt Syndrome a few years previous.
If I can be of any help re ME please get in touch. I also have underactive thyroid but am not on prescribed meds.
Like the girls say you have noticed a relationship between stopping BCP and Symptoms starting I would definitely be pushing for endocrinologist in the first instance.
When my GP first mentioned ME/CFS I worried I would be written off - the anxiety almost killed me so I pushed for a referral to local ME clinic. That was the first step to recovery.
Keep posting and be kind to yourself. 
DaisyB xx

[DaisyB]

Lil22 I also use mostly organic products, soy candles, no chemical air fresheners, use eco washing liquids etc. I manage really well now just the energy and IBS i have to be careful with. I've also started making my own skin products which are all organic or natural.  Interesting point about alcohol- When first diagnosed the smell of wine repulsed me - this year peri hit me full blast and I have totally went off wine again! Fatigue has been chronic at times as well. I can tolerate a couple of Guinness ( I have discovered  ) and yesterday I tried 1 gin with natural tonic water - didn't seem too bad. I'm also ok with not having a routine - for me when I'm low I can only manage 50% of a normal day. But my normal day is about 70% of everyone else's- that's the best way to describe it. exercise is a problem - I have to build slowly and be really careful not to overdo otherwise I'll suffer 

[babyjane]

CFS/ME needs to be respected.  It takes time, but if you can learn your own limitations and the things that can trigger a relapse it is possible to live with the beast and keep it relatively quiet.  The worst thing you can do is fight it or try to 'push through it' as a lot of well meaning friends and family might tell you to do, thinking that they are being helpful by encouraging you to move on.  It really makes things worse because then you are pushing yourself past your limits to please others.

When I was diagnosed in 2004 at the National ME Centre in Romford I was given a printout called 'A guide to ME/CFS for the non sufferer' It was very helpful to those family members I could get to read it  .  Some pooh poohed it and didn't even pick it up but those that mattered did, and have always been supportive.

Of course the hormonal fluctuations of menopause have aggravated it on many occasions, as has my anxiety that I am doing battle with, but you can't blame everything on hormones and the menopause.  Some things are separate in their own right.

Thank you ladies for sharing your experiences in this thread 

[babyjane]

Hi DaisyB and others living with CFS

Daisy it is quite usual for the crash following physical or mental exertion to take 48 hours to kick in and take you by surprise.  I used to run a small forum for people living with CFS and almost all of them reported the same thing, relapse after 48 hours following exertion.  My worst relapse was after my mother died.  I had helped nurse her and care for her for her final 8 weeks.  I just kept going, running on adrenaline as you do.  The ensuing crash and relapse lasted 8 weeks and started after her funeral. Nowadays I can keep things on a more even keel but I am still rubbish at saying 'no' and getting myself into bother 

I do worry about the effect of returning to a stressful job for you but does your HR department know of your difficulties?

I also have sensitivities to a lot of ingredients in toiletries and medication.  Basically the longer the list of additives the worse the effects will be.  I bought some senna tablets this morning and was offered the cheaper, chemists own brand ones.  When I got home and checked the leaflet there was a list as long as your arm of long names with a lot of 'm', 'x', 'y' and 'l' in them    I went back and changed them for the Senokot with a much shorter list of ingredients. 

CFS does seem to lead to a chemical sensitivity for many people.