Menopause Matters Forum
General Discussion => New Members => Topic started by: Aeniad on August 01, 2024, 01:07:56 PM
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I'm 44. About 18 months ago I started to have some symptoms that I thought were perimenopause related: dry eyes, achy breasts, heavy periods, a bit stiff and sore when I woke up in the morning.
About 9 months ago I developed severe aching, stiffness and burning sensations all over my body. Then the twitching started - in my hand, my calf, my hip, my face, my other hand...
I started to panic, thinking I had a sinister disease that was going to kill me. The GP was unconcerned. Said my physical examination and neurological examination were both normal, I didn't have any muscle weakness, and my blood tests were fine. I had no vitamin deficiencies, it wasn't autoimmune, or a virus because my white blood cells weren't high, my liver and kidneys etc were fine, no thyroid issues, or diabetes. They even tested me for Lyme disease. Basically I was in perfect health. They put it down to anxiety because I'd had a cancer scare a few months earlier.
But 9 months have passed and while the symptoms have decreased a bit, they haven't gone away. I can't function normally because of the pain and I'm still terrified that I'm terminally ill. I've been examined by about 10 doctors because I'm convinced they've made a mistake, but they all just say it's anxiety. To be fair I've noticed the twitching gets worse when I feel panicky about my symptoms, but I don't believe it's the sole cause of everything. I can't get referred to a neurologist because the tests all show there's nothing wrong with me. They also won't prescribe HRT because my primary GP says I'm too young and it's definitely not caused by perimenopause.
I've read a few posts on this forum saying that twitching and burning can be perimenopause symptoms. Does anyone have any advice for me please? I'm having panic attacks thinking that I'm dying.
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Oh dear more ignorant GPs who are NOT LISTENING >:( :cuss: :bang: :bang: :bang:
No woman is 'too young'.
If one has more than 3 possible peri-menopause symptoms, medics should take account of those not consider the age range.
Write a letter to the Practice Manager where you are with a brief complaint, same to the British Menopause Society. Ask for a referral to a dedicated menopause clnininc, not a gynaecologist. Change your Surgery?
Because U have had the various tests then GPs should be looking at other causation including hormones! Is there Nurse Practitioner who may be little more knowledgable.
:welcomemm: your experience is sadly all too common. Have U taken anything for the pain?
As oestrogen levels drop so muscles may become lax = aches and pains for which over the counter medication can help. Also the body may become dry: inside and out; scalp, deep in the ears, nostrils, eyes, vagina ........
U R not dying, it may well be The Change!
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It's fantastic rhat your GP has done all these tests but the fact you are still having these symptoms could now mean it is perimenopause. I went private as when GP did finally acknowledge it may be that they gave me antidepressants and as I'm not depressed I didn't take them. The private clinic told me there is no definitive test but based on symptoms so to try hrt for 3months and see if it helps.
Health anxiety is a big symptom of perimenopause,.
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Thank you. I’m thinking it’s you know what because of the twitching. Then I start thinking I’m going to die a horrible death and leave my kids, and life seems pointless, and I spiral into panic attacks. They’ve ruled out the simple causes and said it’s not peri so I feel like all that’s left is the serious stuff.
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As much as they can't properly diagnose perimenopause they also can't rule it out. Perimenopause is diagnosed on symptoms and your synptoms can be those of perimenopause.
The joys of health anxiety is thinking there is something wrong with you, constantly googling symptoms. One way I found of helping was too Google if my symptoms could be perimenopause and 9/10 times it was. If I googled the symptoms it would give me lots of scary ailments.
I think you need to push to either speak to a menopause specialist or ask for some counselling, emphasise how much this is effecting your day to day life and your relationship with family
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I have asked for counselling for health anxiety, it’s a six month wait.
I’m trying to stop myself googling because scary diseases come up and then I have panic attacks.
This seems too severe to be peri and anxiety? Some days my legs hurt so much I struggle to walk. I seem to be straining a muscle every five minutes just by doing something simple like putting the groceries away.
Was hoping someone might be able to reassure me that they had similar and it was just peri.
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For last 6months I had days in bed, sometimes couldn't lift my head off pillow. My GP referred me to neurology who did a mri scan to rule out MS. They actually had me thinking I could have MS instead of just thinking perimenopause. They also discussed fibromyalgia but my referral hasn't come through for that. I was lucky and could pay for a private menopause consultation.
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JS79 are they saying that’s due to perimenopause then?
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They have ruled out lots of things with mri, ct scan, numerous bloods, 24hr heart monitor so because I had a symptom diary and could show that my symptoms got worse just before my period was due they could say that hormones were involved. Going to try hrt for 3months and see how it feel.
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That sounds like pretty bad health anxiety. Aside of the counselling, does your practice or area not have any other services for mental health? Like a health and wellbeing practitioner attached to the practice or psychology practitioner? Counsellors have different backgrounds and qualifications to the other two I mention. My GP surgery has a health and wellbeing practitioner attached with not a very long wait and who can if necessary refer to a psychological associate which isnt a long wait. My point is, there isnt just one profession that supports mental health but maybe it depends on the GP practice. Your distrust at the tests you've had won't be helping the anxiety, its causing a vicious circle. Thing is, once you get into such a state of anxiety over a long period, it takes some time to get the level down so don't panic about that. Don't google health, but google what's available in your area in terms of support. There will be voluntary organisations in addition to the community mental health service. There is the free text service too Shout, https://giveusashout.org/get-help/resources/stress-and-anxiety-support/
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Have U taken anything for the pain?
As oestrogen levels drop so muscles may become lax = aches and pains for which over the counter medication can help. Also the body may become dry: inside and out; scalp, deep in the ears, nostrils, eyes, vagina ........
U R not dying, it may well be The Change!
Do not GOOGLE unless it's NHS web-sites. Also we on this Forum know a lot more than most web-sites and medics ;-). Some find that keeping a mood/food/symptom diary of use to chart progress. Because there are better days which can be easily 4gotten when we feel ill.
How were you during your menstruating years? I had cyclical symptoms so knew that my symptoms were 'normal for me'. As I went into peri my periods waxed and waned: sometimes they would disappear for months .......
Aeniad - breath. Anxiety levels can rise suddenly which won't help our overall worries. Been there etc.. Also: review your overall diet for 3-5 days/nights. Sometimes the body develops food intolerances and certainly alcohol may cause problems. Write everything down and C what U might like to change to improve your feelings: eating regularly saved my Life!
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I had restless leg syndrome for years, cured by eating bananas regularly. When they pull at night - it's always at night - I take Nurofen. Cramp-like symptoms can be eased by adding more salt to our diet.
Getting into fresh air helps a lot, it triggers certain healing hormones so early morning as the sun rises can be beneficial. Not that I am talking from experience because I don't wake very early ::) - swimming, walking; good for bone health; skipping .... sleeping when your brain needs to rest.
TRY NOT TO WORRY TOO MUCH. NOW THAT U ARE ON THE FORUM, BECASUE MANY OF US HAVE HAD A) PROBLEMS WITH MEDICS THINKING THAT WOMEN CAN BE TOO YOUNG!! AND B) MANY OF THE SYMPTOMS THAT YOU ARE FEELING.
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Thank you everyone. I eat bananas and take vitamin supplements, it hasn't helped. I take paracetamol when the pain is bad. To be honest I can cope with the pain, what's bothering me is the anxiety and thinking the twitching is a sinister disease.
I will try keeping a symptom diary and see what comes out of that, thanks for the suggestion.
During my menstruating years I had tummy cramps but not as severe as now, and I didn't have this pain and twitching all over my body. I'm still regular but extremely heavy.
There is no mental health provision at my GP, I have had to be referred to an external service for talking therapies which serves the whole county. Hence the long waiting list. They won't refer me to anything related to menopause because they insist I'm too young and that's not the problem. I'm going to ask again for a referral to neurology, although they said I'd be waiting over a year because my case isn't high priority due to a lack of relevant symptoms.
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If U R able to afford a private consultation, book yourself into a dedicated menopause clinic. U can find out costs by ringing round, some hospitals run specific clinics - not gynaecology - which U should be able to find on the Hospital websites.
Why neurology? Your tests have been within normal limits. I would be sending an e-mail to the Practice Manager asking her to confirm why the GPs have decided that you are 'too young'. What exactly might they be basing their 'knowledge' on? [it may be that this is cost related!] : as well as directing her to this Forum.
Explain to the Manager that 'no lady is too young'. Also, do nip into the daisy web-site, set up for women who really do have an 'early menopause'. Print off any info that may be relevant B4 you ask for a GP appt.. As suggested, take some1 with you.
Heavy periods may well occur as we go into peri-menopause. Mine waxed and waned, I may have said already ...... brain fog is another symptom.
MIND Charity were very helpful when I needed them 6 years ago. Went beyond with support to what I was expecting.
The Change is normal. It can however throw up various weird symptoms! hence the mood/food/symptom diary. Something to shove under the nose of any medic with no knowledge!!
I would also be sending a brief note to the British Menopause Society because they keep trying to reassure women that Medics are being educated !!!
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Let's not overload Aeniad with too many questions and too much advice. Some stuff on here is being repeated. Capitalised print isn't necessary I'm sure. If you have anxiety, there's only so much you can take on board.
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Why neurology? Your tests have been within normal limits.
I’m convinced the persistent twitching and cramping is MS or MND or some other awful disease. My anxiety is through the roof.
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Why neurology? Your tests have been within normal limits.
I’m convinced the persistent twitching and cramping is MS or MND or some other awful disease. My anxiety is through the roof.
I did post a reply earlier but deleted it as there appeared a lot of questions and advice being given but, I wrote that one of my sons had constant leg muscle twitching, I could see it, he was worried sick thinking he had MS as he has a second cousin with it, he was referred to neurology especially as he has a herniated disc, he had a long wait but when he did see the consultant, he was told it was benign muscle tics like the ones you can get in your face. Im sure one or more of the doctors you've seen would have found anything serious by now, they would have acted. Please reassure yourself that you have done the right things, you have had yourself checked and none of those doctors were concerned and then try to tell yourself that you are healthy. You are young and should be enjoying life,
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Thank you. I keep thinking the doctors I’ve seen are GPs not neurologists. They’re saying I don’t have muscle weakness therefore I’m fine. But then I read stories online of people who have the big bad and they started with twitching and cramp. It’s just so worrying.
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Morning. Anxiety is the pits. It can floor me in moments :'( :-\
There is also no logic to anxiety! The brain goes into over load.
General practitioners have access to many specialities to refer problems to as well as being able to order blood tests and other examiantions/tests. U have had many of these but you are still concerned = anxiety levels to continue to rise. This isn't unusual for many people.
R U able to describe the burning sensation?
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The burning is in my muscles. Like when you work out and your muscles burn. Except it’s been constant for 9 months. When it was really bad I couldn’t straighten my legs.
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Does it keep U awake? Could it be lactic acid build up, mayB have a chat with a physio for advice? Or go along to your local leisure centre to see whether there is some1 there to chat with?
Does pain relief help?
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The burning is in my muscles. Like when you work out and your muscles burn. Except it’s been constant for 9 months. When it was really bad I couldn’t straighten my legs.
I've asked my son. He still has his twitching so he's had it at least 3 years. Though forums like these are helpful , you'll just get lay people throwing up more possibilities of cause that you'd not thought about, and questions which will only add to your anxiety. If it were me, I would make another GP appointment and take someone with me and don't be fobbed off till you are satisfied or if you can afford, a private neurology appointment. You need an assertive person to accompany you. Best of luck.
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I’m frustrated because I’ve seen multiple doctors and all I’m getting is a shrug and “there’s nothing wrong you’re in perfect health”.
But I’m not. I’m stiff and burning and twitching. I can’t do my housework or exercise or play football with my kids. And I’m terrified.
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Frustrating for you becasue if there isn't any improvement the brain may well focus on the 'what ifs'.
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They keep saying it’s “functional neurological disorder caused by anxiety”. Which basically means “it’s all in your mind”.
I know it can be symptoms of perimenopause, and I have other peri symptoms like flooding periods and dry eyes. But they just keep saying I’m too young.
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They keep saying it’s “functional neurological disorder caused by anxiety”. Which basically means “it’s all in your mind”.
I know it can be symptoms of perimenopause, and I have other peri symptoms like flooding periods and dry eyes. But they just keep saying I’m too young.
No it doesn't mean that. A neurological disorder is just that, and anxiety can cause neurological disturbance. But they should have directed you to help with anxiety. You really need to address that.
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Change your GP Surgery.
Have a lookC at the Daisy web-site.
make an appt with the Practice Manager to discuss and advise her about this Forum.
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They keep saying it’s “functional neurological disorder caused by anxiety”. Which basically means “it’s all in your mind”.
I know it can be symptoms of perimenopause, and I have other peri symptoms like flooding periods and dry eyes. But they just keep saying I’m too young.
Functional Neurological Disorder is a diagnosis made when all other possibilities have been excluded. It doesn't mean it's all in your mind. Have you investigated this further? There is also a condition called Benign Fasciculation Syndrome. This is also linked to anxiety. It sounds as if you may have both of these syndromes and they do often occur together. It is not an imaginary illness but the physical symptoms are caused by underlying anxiety. Sometimes sufferers feel as if they have MS or MND.
Taz x :hug:
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The doctor just said FND because we can’t find anything else wrong, gave me a leaflet about it and told me to go away and relax.
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They keep saying it’s “functional neurological disorder caused by anxiety”. Which basically means “it’s all in your mind”.
I know it can be symptoms of perimenopause, and I have other peri symptoms like flooding periods and dry eyes. But they just keep saying I’m too young.
Functional Neurological Disorder is a diagnosis made when all other possibilities have been excluded. It doesn't mean it's all in your mind. Have you investigated this further? There is also a condition called Benign Fasciculation Syndrome. This is also linked to anxiety. It sounds as if you may have both of these syndromes and they do often occur together. It is not an imaginary illness but the physical symptoms are caused by underlying anxiety. Sometimes sufferers feel as if they have MS or MND.
Taz x :hug:
That's the diagnosis my son got, either that or peripheral hyperactivity syndrome from the neurologist. He should have had a test but covid struck and by the time they started up again he decided he'd not gone worse, nothing bad had happened so he accepted it was one or the other and has learned to ignore it. He suffers from anxiety.
Aeniad, you have choices, you either accept the doctors diagnosis and try to address the anxiety and review your symptoms or you pay for a private consultation. Otherwise you'll go round in circles increasing your anxiety and panic and make yourself more ill. You are doing what people with anxiety do; they ask different people because they dont believe what they've been told, youre hoping to get a different answer that makes sense.
If you really are suspicious of your diagnosis, see a neurologist. It costs around £250 depending on individual consultants however tests and review appointments are extra.
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Aeniad,
I’ve had neuropathy since July of ‘24. I was abruptly taken off the patch bcuz of my blood pressure getting high. At that time I also found out I have Hashimotos. So I’m not sure if low estrogen or the Hashimotos is causing my whole body burning. I get stabbing pains too all over, though not as bad as the burning. When I get stressed I can really feel more burning. I’ve also got occipital neuralgia now too. It’s been my worse symptom. I can handle the burning, but the head burning and heavy head making me off balance is by far the worse symptom. I’ve had Ct scans and mris and always tell me they’re fine. Hard not to go down the ole rabbit hole. And my anxiety has been thru the roof too. I hope you’re doing better. Are you still on HRT?