The Menopause & ME
I have suffered with M.E. since 1996 but was still able to work part time until 2003, when neurological symptoms began in earnest and I began suffering from brain fog, consequently making so many mistakes that I was unable to carry on working.
Noticing that symptoms seem to occur in phases in my case – for instance, several months of painful neck, back and knees, months of migraine etc., with ‘new’ phases beginning from time to time – I tend to put any new developments down to M.E., which in hindsight is probably a mistake, as it is always a good idea to have any new symptoms checked out by a doctor. I therefore decided that what I now know to be perimenopause was merely yet another exacerbation of M.E. symptoms.
So – wow…where to begin? Many of the symptoms of M.E. overlap with perimenopausal symptoms (perimenopause being the ‘run up’ to the menopause. The menopause basically being the cessation of periods for a year) and the ‘peri’ phase (or should I say ‘signs’?) can last from a year to ten years, I am told. Intolerance of temperature fluctuations, migraine, skin rashes, cystitis, bladder incontinence, mood swings, painful periods, sleep disturbances, hair thinning, etc., I found it extremely difficult to differentiate the symptoms and it was only due to exceptionally heavy bleeding lasting for 14 days at a time that I trotted along to my doctor.
It has been explained to me that M.E. exacerbates the menopausal symptoms and the menopausal symptoms exacerbate the M.E. symptoms, and wow oh wow, is it a rollercoaster!
My previously quiet nature, which became somewhat volatile with M.E. mood swings, has now changed – in fact, I’ve been told (chuckle…) that I have changed from a Dormouse into a Rattlesnake – tread on my tail at your own peril! To be honest, I rather enjoy the freedom of voicing any displeasure at the top of my voice (even if it gives me a headache) and part of me enjoys seeing the surprise on people’s faces at seeing a Dormouse ROAR.
I have noticed throughout my M.E. that I tend to have short periods of depression. Maybe this is the perfectly understandable depression of having to live life with a life shattering illness, or maybe it’s purely a lack of certain chemicals, but since being perimenopausal, the phases of depression have been somewhat longer and of a slightly different nature somehow.
I also occasionally wallow in ‘empty nest syndrome’ – the children have flown the nest, M.E. forced me to give up work, I am no longer capable of my old hobbies – I have the time to do things now but am not physically able, and as for the financial situation…it’s dire to say the least…oops here I go…wallow…wallow…
The forgetfulness of M.E. has turned into ‘mind wipe’; instead of ‘did I put the cat out?’ it’s, ‘Cat ..what cat????’ (it’s ok – puss has a cat flap). I turned up for an appointment the other day to find out that I was late…five days late!
Hot flushes are hilarious…I wake up…have a hot flush…then cool down and decide it must be cold outside, so dress in jeans and a jumper…only to find other people wearing shorts and summer skirts.
Sometimes the skin on my neck looks dry and hangs in folds (yep – just like a turkey), then the following morning it’s rehydrated itself and is back to normal.
Periods are completely unpredictable (and don’t we M.E. ‘ites’ know the meaning of ‘unpredictable’ hey?); sometimes they last for two weeks (and need Tranexamic Acid (on prescription) to calm them), then…nothing for three months…the only indication of their imminent arrival is a huge build-up of emotional pressure…the last period heralded by the crunch of a breakfast bowl hitting the pantry door!!! (Gee…I’m sure I ought to be ashamed.)
My long suffering doctor prescribed Utovlan. It worked…but I just felt like I wanted to sit in a corner, clutching a tissue listening to sad music. So hello Tranexamic Acid – which seems to work pretty well. The other option is to have a Mirena Coil fitted – it releases a progesterone-like substance directly to where it’s needed, rather than affecting the whole body. GPs can normally fit it – but due to some scar tissue I would need a general anaesthetic and to have it fitted in hospital. Can’t say I’m terribly keen on that – you know how we M.E. ‘ites’ don’t get on terribly well with body traumas and, of course, there would be the recovery time needed. I have found that I need to guard my ‘good days’ with a vengeance and therefore, if there is a risk of losing my good days, I opt out.
I’m going to try the herbal approach – and see if I can wait it out until full-blown menopause arrives.
My body shape has altered; I put on two stones due to M.E. and lack of exercise, and I have turned into a ‘pear shape’…but am told another stone will follow after the menopause (drat…and I’ve been storing my old work suits ready for the M.E. cure and my weight to return to ‘normal’).
During the course of a month I have found that my dress size alters to three different sizes (yep – all around the waist and hips); this, I’ve been told, is due to hormone action on bowels… so the advice is to definitely have breakfast, keep sipping plain water, have three meals per day and keep the bowels active. I just try to smile sweetly when approached by acquaintances whose eyes linger over my swollen tummy and then launch into, “Late baby hey?”...hissss.
I’ve only mentioned my main symptoms but there are myriads of the little gremlins, all mostly treatable, all mostly transient, and, at least there is an end in sight…a total cessation of periods!!!
Two books I have found particularly useful regarding perimenopause and menopause are: 'Holistic Menopause' by Judy Hall and Robert Jacobs MRCS LRCP (Findhorn Press Ltd. 1998, ISBN-10: 1899171320) and 'The Change before the Change' by Dr Laura E Corio and Linda G Khan (Piatkus 2005, ISBN-10: 0749926198).
Dr Anne Macintyre's 'M.E. Chronic Fatigue Syndrome: A Practical Guide' (Thorsons 1998, ISBN 0-7225-3539-2) includes some information on the menopause and M.E.
NHS Direct has a short article on the menopause and related subjects, with some useful links to other sites.
In a nutshell, although perimenopause and the menopause itself are ‘natural’ events in a woman’s life – both events certainly seem to exacerbate and be exacerbated by M.E.
Return of the Mouse
It is now January 2013 and the perimenopause is a distance memory!! I just asked my husband if he can remember my perimenopause time; he visibly cringed, gave a wry smile and said, ‘No, thank goodness, and I wouldn’t want to try’.
The only way I could find to ‘handle’ it was to take each symptom at a time and assure myself that it REALLY WOULD PASS.
Re-reading the article, I really DO have to chuckle at the ‘Rattlesnake’ – and can hardly believe that the Mouse Roared (and even raised her voice!!), particularly now that familiar Mouse is back and just ‘squeaks’ from time to time (only if it’s ok with everyone).
I am also very glad that I didn’t pursue HRT; at least I know the menopause is well and truly over and done with. No doubt it’s different for everyone, but with M.E. exacerbation, it was difficult enough getting through it at my age, and in my own opinion, it would have been just delaying the inevitable (plus, being older, I felt it would therefore be harder to deal with).
It’s well worth consulting a GP before embarking on any natural/herbal remedies – but the remedies I found useful are as follows:
- Potters Quiet Life Tablets - soothing, calming, non-drowsy during the day and an extra tablet can be taken at night to aid restful sleep.
- Black Cohosh Tablets - advice is to take for a maximum of 6 months.
- Prescribed Quinine from GP stopped night cramp and also vastly reduced night sweats.
- Thinning hair was well worth mentioning to GP, who carried out a blood test and discovered low ferritin levels. The extra hair in the plughole from time to time served as a good indicator and GP prescribed iron tablets.
- Prescribed Propranolol helped a great deal with palpitations, anxiety and panic attacks.
Sadly, my Mother died during my perimenopause. I was able to grieve in my own time and ‘pace’ what needed to be done; I was, of course, very sad and grieving, but it was ‘normal’ grief and not exacerbated by the perimenopause.
However, psychological pressure was very much harder to handle, particularly when I was pushed past my M.E. physical limits, brain exhaustion and worry, following an extremely unpleasant medical assessment for Disability Living Allowance purposes, which was to say the least ‘untruthful’. DLA being my financial ‘lifeline’, I had to appeal, attend a tribunal miles from home, was ‘robustly’ ‘interrogated for about an hour and a half, then a long journey home and, two weeks later, another medical assessment. It all proved far too much for my hormones and resulted in a major M.E. relapse, and deep long-lasting depression and other problems. Perimenopause ‘brain fog’, mixed with M.E. ‘brain fog’, exacerbated the psychological pressure. What I’m really trying to say is, if it is at all possible, please avoid psychological pressure at such a hormonally vulnerable time.
Hot Flushes: Profuse underarm perspiration was solved by trial and error and Dove Maximum Protection. Fragrance Free Baby Wipes were permanently within reach – a quick freshen up/cool down.
Weight: Hmmm, after the ‘gain’, came the ‘loss’; I’m not sure if it’s due to my genes (I’m shaped like a pencil), or maybe the DLA ‘meltdown’, but weight steadily reduced itself, and I’m back to my pre-perimenopausal size.
I’m completely back to my premenopausal self (squeak and all), although a tiny part of me wishes that a little of the ‘Rattlesnake’ had remained…sigh… the M.E. is no better and no worse.
‘Pepper and salt’ hair, crow’s feet (at least they prove I smile) and a neck that cries out for moisturiser, but it’s OVER AND DONE WITH! I am still waiting for the shawl of ‘elder wisdom’ to float down and settle around my shoulders, but until then I’ll just have to muddle through life as best I can.
Gosh, it’s October 2015 and I can barely believe how time has flown by! Unfortunately, still no ‘shawl of wisdom’, but a girl can hope. I asked our vet if cats have menopause, and wished I hadn’t when he informed me ‘no’, they stay fertile until death!
Interestingly, I still have a milder form of ‘hot flush’, curiously at 10.30 at night, and the heavy duty deodorant still has a place in my life. My weight crept up again with very little encouragement… unless doughnuts and a craving for carbs counts?! The cyst on my ovaries has either resolved itself or at least is unnoticeable these days.
Other than hair becoming finer, thinner, and streaked with white rather than salt and pepper, stiffer joints and the ‘usual’ accompaniments that arrive with aging, all the horrid menopausal symptoms have disappeared into the mists of time. Hang on in there dear reader, it will pass.
The North American Menopause Society is one of the best websites I’ve found on the subject. Earlier this year they announced a link between Chronic Fatigue Syndrome and early menopause, as well as other gynaecological problems such as pelvic pain. The findings of U.S. Centers for Disease Control scientists are based on a long-term study of CFS and other fatiguing illnesses, which examined the differences between 84 women diagnosed with CFS and 73 healthy women. Comparison found marked variance in the gynaecological history of the two groups. Two-thirds of the women with CFS had undergone at least one gynaecological surgery, with hysterectomy the most common. Early menopause due to this surgery occurred much more often in CFS patients, with natural menopause also occurring slightly earlier than for the healthy women. Women with CFS were 12 times more likely than healthy women to have pelvic pain unrelated to menstruation, and also were more likely to suffer from excessive bleeding, bleeding between periods and missing periods. You can read the full press release on EurekAlert! and more about the gynaecological effects of M.E./CFS on Emerge Australia.
If anyone was to ask me for advice regarding the Menopause and M.E. I would suggest treating each new symptom separately and hold on to the thought that the menopausal symptoms really WILL PASS.