Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: Oohbetty72 on April 12, 2024, 10:59:49 AM
-
Hi ladies it's my first time posting on here and I'm desperate for some advice as I'm being blindsided all the time by medical professionals unfortunately. I know they're all stressed after covid and overworked but this is becoming intolerable to live with. I'm 52 years old and not on HRT.
Last year I became unwell out of the blue with unusual and scary symptoms and I called NHS 111 who directed me to the UTC Dept at my local hospital. I was told it was my probably my weight/hormones and a sedentary lifestyle by a rude female doctor about the same size as me! I'm active and walk a lot so that really offended me. I'm not excessively overweight either. The symptoms were a red ankle, burning and pins and needles in my legs below the knee accompanied by feeling virusy and just overall really strange and unwell. It had never happened before I've always been pretty healthy and eat well, no frequent takeaways and rarely drink/don't smoke. I only had my BP taken and sent home and told to see my GP. A few days later I felt even worse with pins and needles in my face and again referred to UTC Dept. I was asked what I was doing there and I said NHS 111 sent me because they thought it may be a mini stroke. I felt like I was wasting their time! Again sent home no tests except BP taken. In that time I had blood tests at my GP which came back ok and was told by her "maybe it's a virus". I asked for a menopause test but was declined. My symptoms subsided after about a week but the legs took a bit longer to feel normal. I didn't go back because no one was taking me seriously.
Fast forward nearly a year later and I have been ill again every day with the same symptoms since 10th March so into my 5th week? The first week I felt aches/pains which subsided and the second week my legs started burning again, pins and needles, heavy and a feeling of a virus. This time it felt worse like I was being poisoned. My body just felt inflamed all day every day it's hard to describe. Also fatigued and slept a lot. Some days have been worse than others and I had blood tests and had an appointment a week later to discuss the results. My virusy symptoms subsided a bit and so did the legs but only slightly. Also the inflamed feeling. I asked for a menopause test again but refused and this time was told as it's been nearly 2 years since my period and I don't get night sweats and hot flushes all the time I've probably passed my menopause. This didn't sound right after what some friends are going through and everyone seems to be on HRT except me! I asked what it could be and said maybe a new virus but what virus affects the legs?! I mentioned long covid but this was dismissed and I left feeling no clearer on what is wrong. She said she wasn't worried as I was feeling a bit better but is referring me for a head scan. (I had covid in Feb and have read it can affect your organs and central nervous system). I forgot to mention I have permanent Tinnitus since it all started in March.
I came away feeling anxious and down not happy with being dismissed for help in case it's menopause related so called reception to see if they could advise me and they're referring me for an appointment at a Menopause Clinic but that's in 3 weeks. I don't know even know if it's the menopause.
The last couple of days I seem to have gone backwards again and feel virally with all the symptoms and have just had enough. My legs are burning and my body is tingling all over like it's still fighting something. I never wake up feeling good or my normal self so it's causing so much anxiety and have never been anxious before!
I did read a few posts on here where women have said they feel ill with menopause so I'm hoping it's just that. A friend who works in the medical field said to me it could be M.E. after having covid but I really need to get a second opinion as it's just getting me down not knowing. Someone must be able to give a diagnosis as I know not all conditions are detectable with blood tests. I will look into it next week but I just wanted to ask on here to see if anyone else can relate before I lose my mind!
Any advice would be gratefully appreciated thank you! 🙏
-
Of course it's getting you down! The NHS really is on it's knees and if 'they' can send patients away with an 'excuse' rather than referring or doing appropriate tests, it seems that we are over all being fobebed off!
If U had your last period 2 years ago with no bleed since, U may well be into menopause = last monthly bleed.
The fluey symptoms with leg problems may well be due to a spinal issue, i.e. something 'trapped'.
R U able to remember how you felt in February? Could it be long-covid i.e. symptoms that continue after 3 months without getting worse or improving? Tinnitus may be due to low oestrogen, a lot of us have it so mayB look for the 'tinnutes' threads. Although annoying it isn't dangerous, mayB get an appt with an audiologist who can give your ears a thorough examination. My 2 appts cost £70.00, check up followed 3 weeks later by syringing.
Have a lookC at the long Covid reports for better advice.
Also check your over all diet: how much processed foods do you eat for example? Good that your exercise is OK. But your strange symptoms should not be dismissed!
-
I wonder if you come under the 'we don't know' category. On the face of it it does sound more like a virus/long covid type of problem rather than meno though if they can't come up with anything specific perhaps youbcould trial low dose hrtcand see if it makes any difference? I haven't heard of pins and needles being a meno symptom, it does sound more like a nerve/virus issue to me (but I'm not a doctor and could be totally wrong).
-
MayB get yourself to a Physiotherapist? If your GP isn't listening then a physio. may be able to check your walking gait, your general stance, give advice on to exercises that may help. Pins and needles = Carpal Tunnel = in pregnancy is certainly hormonally related and some do mention CT in peri menopause.
Posture as well as bad foot wear can certainly impact from head to foot and if a nerve is trapped or annoyed then pins and needles may be troublesome.
I believe that we can self refer to an NHS physiotherapist there days. It may be worth while paying if necessary for peace of mind.
-
Hi I had lots of random symptoms and I was very unwell. No one could work out what was wrong with me ! It all turned out to be due to menopause.
I had burning sensations in my forearms; electric shock sensations in my legs; tingling in my fingers; pins and needles; …. the list goes on and on.
Go onto Google and look up ‘ pins and needles and menopause.’ You’ll find out how oestrogen deficiency affects the nervous system.
-
Thank you ladies. I’m not sure how to reply individually if that’s possible. In reply to CLKD thanks for your advice and I will look into an audiologist and physiotherapist. The only thing is these nerve issues appeared only when I started feeling virusy and disappeared again last year when I had this for a couple of weeks. Yes the NHS are on their knees and I feel bad criticising them but I’ve hit rock bottom too and desperate for help. I rarely bother the GP’s as I’m usually healthy. I don’t feel it’s spinal issues because I don’t get back pains or twinges and I’m active all day, not just on walks with my collie so this is all new except for when it first appeared last year. Obviously my walks and activity levels are harder to maintain this time around feeling so bad with feeling virally and the added fatigue but I have a varied diet, some of it organic and wholegrain, no ready meals except maybe a takeaway twice yearly. Basically very little processed food really and I mostly cook from scratch. I literally woke up 10th March feeling a bit run down. I did a bit of research about long covid and according to WHO there have been 200 reported side effects and a lot of them are similar to what I have so I am going to get a second opinion, even 3rd if I have to. Feeling ill every day for 6/7 weeks on the trot is starting to make me feel panicky because I see no light at the end of the tunnel having no diagnosis or support from the GP’s. I started to feel a bit better a few days ago then went down. I’ve never had a “good”day and the tinnitus is permanently present. A little is known about long covid but I will try and go private if I can sort some funds. I felt ill in Feb for 3 weeks but it didn’t affect my lungs thankfully. I tested negative but still felt virally for a bit longer and then mainly fatigue. Then I was fine for about a month. I thought long covid is just where it takes longer to recover but a friend of mine got covid, recovered and then fell ill again with covid weeks later. Some health websites are saying it can come back in waves but you still test negative. It could be menopausal and I really hope so but knowing my luck it’s long covid or something rare! It’s weird how my bloods came back ok except slight inflammation but if they tested me for meno maybe it would show really low levels of oestrogen or something. Other friends have been tested just seems to be me! It’s hard to describe but my body feels inflamed inside as well as burning legs and all the other symptoms. :'(
Dotty = I’m sorry to hear that you suffered badly too, if no one could work out what was wrong did you get tested privately for menopause in the end and how long were your symptoms for? Did you feel virally, and your body inflamed along with the pins and needles? I will read up on the effects on the nervous system thanks for the tip.
Sheila - thanks for your reply I feel it could be virusy too but this is a long slog, I asked the GP if it could be long covid but she just seemed to be dismissive and said something about since Covid 19 other viruses are surfacing or something along those lines. Now just waiting for a head scan referral letter. I have heard pins and needles being a meno issue but this is a whole range of symptoms lasting several weeks so we’ll see. Someone must have answers it just may take some time and I’m definitely going to ask to go on HRT even at a low dose. I can’t cope with this much longer I’ll try anything!
Thanks for your advice and support so far ladies it means a lot :-*
-
Hi OohBetty72….i suffered for years and was very unwell . Doctors said i had ME / CFS….basically cos they didn’t know what was wrong with me. I just felt ill, very ill. I had loads of random symptoms but nobody joined them altogether. I tried everything and paid a lot of money out. In the end I diagnosed myself …. suddenly I realised what was wrong with me. But still the GPs refused to acknowledge that my symptoms were due to menopause. I was tested for everything under the sun ! I finally got on HRT and the dose they gave me did nothing. I paid to see a private specialist and he listened to my story and confirmed that my horrendous symptoms were due to menopause. He prescribed Oestrogel, Utrogestan and testosterone and slowly I began to get better. I won’t say it was a miracle cure but it gave me my life back. I’ve had problems along the way and I’m sure that I suffer from PTSD because of what I went through. xx
-
Hi OohBetty72
I'm post meno and also developed literally overnight random symptoms. I had no symptoms really in peri, my last period was about 2018. In 2020/2021 I started getting night sweats in which the sheet was soaked and occasional panic attacks but I could cope. Then in 2022 out of the blue I got tinnitus in one ear (which is now permanent) although thankfully, it comes and goes and I really don't notice it that much, then I got insomnia and chronic anxiety, and like Dotty, I really believe I have PTSD as a result of my symptoms.
I'm on hrt and as Dotty also said it isn't a miracle cure but it does help. My gp gave me amitryptline 10mg for nerve pain, it doesn't sedate me so I take it in the morning, however what I've found does help sometimes relax me in bed if I struggle for sleep, is Reakiro 25mg cbd gummies.
-
Hi discogirl…. sending you a hug …. sometimes it helps to write down what’s happened, just like we just have done. xxx
-
It really does Dotty. Hope you're keeping ok. sending hugs back x
-
Sorry ladies I will reply in more detail later my son visited yesterday and today having issues with my phone charger! It's all so reassuring so sending thanks and hugs :-* x
-
Hi again Dotty and Discogirl thanks both for your replies. As much as it sounds like it's been a horrendous journey for both of you it does give me some hope as it's been 5 weeks today since this nightmare started. Every day I wake up ill with all the same symptoms I mentioned before, the worst feeling I'm fighting a virus, hoping the next day I'll feel normal again but yesterday just had a complete meltdown for the first time. I'm strong but this has been beating me. Until I read your responses knowing it could be menopause related so your support is really appreciated thank you 🫶. It's exhausting being ill for so long and not knowing what's wrong as I'm sure you've both experienced. All I know is it "maybe a virus". I have never had a virus like this in my life! I really don't know why the GP's show little support for us women. Especially when the ones I've seen are female! It's enough to send you crazy. 🤪
My appointment to discuss the menopause is not until May but I'm going to push for a second opinion sooner for these symptoms just to make sure nothing has been missed. I may get an appointment with a private GP if I'm still getting nowhere. I can't cope mentally with this until May. I'm sorry it's caused you to both experience PTSD you've had to suffer so long without answers or support. (Thank god for this group!). I can see how that can happen but it shouldn't!
I think even if I was told it's ME/CFS/Meno or long covid at least I'd know there's light at the end of the tunnel even though I know all the above can be a battle for years. I had no idea menopause can make you feel this bad though, the doctor I saw seemed to suggest two symptoms being hot flushes and night sweats and because I wasn't having those regularly I'm over the meno! I do get both occasionally but just randomly. I'm probably post menopausal but women can have symptoms for years I've heard.
I've taken a note of what treatments you've both tried and will write them down for when I see the GP or a specialist.
Dotty - I'm not sure how long ago this was but may I ask who your private specialist was? Just in case they're within reasonable travelling distance to me and I'm getting no joy elsewhere. If not don't worry. Also you say you diagnosed yourself - were there any particular medical websites that were more helpful or do you mean from hearing other women's on menopause forums? I've found the NHS and other UK sites not very informative when it comes to more rare menopause symptoms.
Thanks again ladies, sending hugs to you and everyone who has given advice and support so far 🤗 ❤️ xx
-
Could it be a b12 deficiency?
-
Thanks Applejack but the doctor said my B12 levels were fine but my Vitamin D levels are very slightly low but I can't see that making me feel this unwell. I'm going to start taking Centrum Multivitamins for 50+ women and see if they help. I've never been a vitamin taker before but at this point willing to try anything!
-
I have burning legs, pretty badly really, but that came ca 20 years of them swelling which started with peri... It's vascular caused by swelling which is genetic.I now wear compression stockings (knee-high) everyday.. You could try if your legs swell..?
But if you are 52 and have strange symptoms you can't put your finger on, my bet is it's hormonal!
Is your mother alive so you could ask..?
-
Thanks Applejack but the doctor said my B12 levels were fine
I was recently diagnosed as having “fine” b12 levels but most European countries have a higher threshold than the uk. Mine was 220 which would be considered deficient in, say, Italy or Japan. I pushed and pushed and had to go private for extra tests where they found a gastric antibody which stops b12 absorption so now I’m on shots for life. My levels by then had dropped below the threshold but they wouldn’t have tested me again had the antibody not been confirmed elsewhere.
Symptoms were tingling in the feet, twitching in my cheek which was really disconcerting. My nails were a bizarre colour. Much better now. I’m not saying this is what you have but some of the symptoms seem familiar.
-
Hi Orla thanks for your input, it doesn't sound like it's been a pleasant experience for you either so sorry to hear that. I have no swelling just burning/pins and needles constantly and it came on all of a sudden on 10th March with the virally feeling. Both go hand in hand. The first week it was just fatigue/aches and pains then second week onwards legs etc. If it was those burning symptoms alone I could probably cope a bit better but every day I wake up I feeling virusy and unwell, inflamed inside along with those leg symptoms and ringing in my head/ears. Also fatigued and lethargic. It's been 5 weeks yesterday and before that I was perfectly fine except for contracting covid in February. I had these symptoms last year but for about a week as explained in my original post and again dismissed. It's so bizarre.
My 90 year mother says she never had a single problem during menopause and sailed through it. Lucky her! 😒😏
I'm really not sure if it's a postal viral condition or menopause, maybe a combination of both! Going to ask for a second opinion because I have zero quality of life at the moment! Thanks again and all the best to you.
-
Applejack - that's an interesting point thank you. I will consider having my B12 levels retested privately if my symptoms don't improve. I have to do something I can't function daily although dragging myself through as best I can because if I think too deeply anxiety kicks in. Mainly due to not having answers and feeling ill every day I'm not an anxious person normally and it's not been an issue during menopause. It does sound similar yes and sorry you had a battle to get answers too. What a nightmare for us ladies! Thanks again.
-
I was recently diagnosed as having “fine” b12 levels but most European countries have a higher threshold than the uk. Mine was 220 which would be considered deficient in, say, Italy or Japan. I pushed and pushed and had to go private for extra tests where they found a gastric antibody which stops b12 absorption so now I’m on shots for life. My levels by then had dropped below the threshold but they wouldn’t have tested me again had the antibody not been confirmed elsewhere.
That’s really interesting Applejack. What were you told (by the eventual people) about what level should be, ie is in other countries?
Mine is about same as your 220 (so Obvs also told fine!). I also notice that is very much lower than it was a couple of years ago … any idea of whether/ why it changes ?
Xx
-
I think in other countries it's something like 300-350. I do know that the NHS are revising the process for B12 diagnosis so hopefully they'll raise the threshold as well. You can have "normal" range B12 but out of normal range Active B12 which they don't test you for. Low B12 can make you feel like absolute sh*te and even people within range can have awful symptoms. I think the new NHS guideline includes "treat the symptoms even if the level is within range" now.
It sometimes pairs up with low folates which they end up treating you for instead of low B12 and that's another can of worms.
No idea why mine changed but I started to feel tingly and awful a few months after getting covid in late 2022. It could be a complete coincidence of course and I'd never paid attention to B12 levels before then but I'd never had persistent tingling and pins and needles until that point so I've self diagnosed!
It can also cause brain fog and cognitive impairment which is a symptom of menopause so it's difficult to know what's causing what.
-
That's a really interesting topic regarding B12 levels. I will look into that further. It seems to be a battle to get answers or a correct diagnosis and we're having to self diagnose a lot of the time. This forum is a godsend.
Re you getting tingly and feeling awful after covid in 2022 that's also really strange, it seems to be the same as I'm experiencing. I'm into my 6th week now and I've had enough. It's been 2 months since I first contracted covid with a 2 week gap of recovery. I've still got the same symptoms as I mentioned in my first post which vary in intensity but now chronic fatigue is setting in.
I do have an update though. I booked to see a private GP Monday as I felt so iĺl over the weekend and it's all getting me down now especially not having a clue what's wrong so wanted a second opinion. I paid the £69 fee and described my issues but he emailed me back saying it sounds chronic, I need a specialist so to go back to my GP and refunded me immediately! It made me feel I'd lost all hope if he couldn't even help me. I didn't want a miracle cure just suggestions as to what it could be instead of being told the usual "it's probably a virus".
Then luckily I had a yearly telephone appointment with my Dermatologist as I have a skin condition and we have a brief chat to see how things are. She used to be a GP so I basically broke down on the phone explaining what was happening and she immediately said it sounds like I have a mix of Post Viral Syndrome (I think that's also classed as M.E.) related to having covid in February and also hormones. (I explained I have the occasional hot flush and night sweats but not enough to bother me). She was sympathetic and said I should also be getting more support regarding menopause in case some symptoms are related. She's kindly writing to my GP to make them listen. It was the first time I saw light at the end of the tunnel. I do have a telephone appointment next Friday after I asked for a second opinion with reception but I just wanted help sooner as that was booked 3 weeks ago.
I'll come back with more updates when I get more answers.
How are we all still sane?! 😬
-
Hi Oohbetty.....when I first started being ill I didn't have any hot flushes or night sweats or any of the traditional menopause symptoms. They didn't start till much later in my journey. My first symptoms were total exhaustion: horrific nausea; a feeling that my body was poisoned; insomnia; I couldn't eat; I felt dizzy and disoriented all the time. xx
-
Hi Dotty sorry for the delay.
That sounds an horrific experience and although I don't get nausea or dizziness it's the poisoning symptom I can relate to. It's relentless and every day I feel ill, but more virally than anything. The poisoning feeling is not quite as strong just feels my body is under attack. I'm still buzzing and burning in my body head to toe with tinnitus and chronic fatigue. I'm still waiting for my appointment next week but may try and bring it forward.
Thanks for your input it helps to know I'm not alone. I just hope if they put me on HRT it helps and it's not just post viral symptoms which drag on for months or longer. I mustn't think the worst! I'm eating and sleeping better than I ever have and it's not helping at all but I just need to hang in there and keep strong. It's mentally challenging that's for sure! Annoyingly I thought I was getting slightly better until a week ago and went backwards.
Thanks again much appreciated 🫶 xx
-
Oohbetty …. My symptoms were put down to post viral.
There are lots of ladies who suffer with tinnitus due to low oestrogen. x
-
Hi Dotty
That's interesting but I guess probably because I'd been recovering from covid 2 weeks prior to feeling like this. I was just grateful she gave me some kind of answers when others have just said it's another virus. Hopefully I'll get myself sorted soon otherwise I'll go loopy 🤪 x