I think I am dying/2 years hell with lots of tests no answers/ Is it perimenopause??
Posted , 10 users are following.
Hello Ladies, I am new here and hope posting in right group. Forgive my English is not good but I ll try 😃 Post is long since I have lot to say❤
in 2014 I got heavy periods with clots , could not leave house , started mirena . looked like blessing. after some time I developed burning pain in upper back and after many tests was just diagnosed with muscle strain. I started gaining weight ... periods never stopped but became very less. 2017 I got left arm weird feeling , kind of was not mine followed right leg same thing. Yearly 2018 I got every mont h bad headache and abdominal cramps before period. in 2018 October I got spasm in my left buttock , vagina and rectal area with pulling sensation like feeling heaviness . I was on mirena iud since 2015.
all got bad in 2018. I started having bad cough with ear ache and heavy period. went to gyn , tests all good, ent all good , ct lungs all good , procto tests all good nothing could explain my symptoms. pain in buttock unable to sleep , ball sensation vagina , heavy legs and burning coccyx pain on top of all I started to sweat night , woke up to change pj and bed every night.got shakes , tremors, skin crowling sensations like someone was touching my skin or something, itchy and hair fall like hell.
my spasm went away after 4 month , but I started loosing weight 20 lb in 4 month, I looked terrible.pale , sick like skinny and had bad bad cough. I started limping on left leg and I noticed my left gluteus muscle was smaller then right and I was convinced I had MS. brain mri showed nothing and I was told ms does not cause muscle wasting and I panicked . I have ALS !!! Saw many neuros done emg and ALS specialist told me it is not als.. I even vent to Mayo ALS clinic but all clean. I was going nuts... I was sure I had ALS just not meeting criteria of diagnosis, I developed muscle twitches and I got sooo weak I was in bed for long time , with left facial twitching, fatigue weakness and left side leg buttock pain.
I was getting worse... diarhea , breast pain and lots of crying about everything. saw again all chain of Doctors , sonos, mri ct scans and nothing... I started having burning tongue and lesion on lips.. Now I was sure I had oral cancer , saw ent , pet scan , clean... biopsy of lip ... nothing. my skin changed color ... biopsy ... nothing... draw blood for lymphoma... nothing.
worse had to come... I developed strange head pressure with slowing mu speech and again I went to neuro , brain mri .., emg ... nothing.
I was slurring speech , was slowed in walking and even I was walking more left side , loosing balance. I was 100% sure : I am dying. corona came 2019 and I did not care. I took trip to Johns Hopkins neurology . NOTHInG!!!
I asked my obgyn to take my mirena out , only thing I could think of was that may be it was the cause, previously many times asked for but I was reassured it was not the cause and was all this nothing to do with women health thing. but this time I said, just do it and it was out.
Now I have been without Mirena for almost 6 month and my head pressure is gone, my slurred speech is gone but sometimes if im tired I get a bit slow. my new symptom is very very bad pain in my thoracic spine and around ribs with tight feeling and like I have diaphragm spasm and cant breathe , feels heavy around . had spine mri again, and guess what --- nothing. I cough since .. no covid had many tests, that started before covid anyways ... I have left hand weakness sometimes , left buttock weakness , bend like pain back and ribs . bad bad headache before periods and they are heavy again without mirena. I have days that I just have to eat so badly and I become red on face and I cant breathe and have heavy back , rib , diaphragm pulling feeling. I have ct of chest schedule d due my cough again, hope its not cancer 😦( I think I have perimenopause attack. what do you think?
I have days , I cant function at all. I am 43, have 9 and 19 y okd kids and lovely husband and I made them all crazy in this ordeal of craziness and Docs and tests and all this.
I am sorry for long post. please to share your opinion and forgive me my bad English!
Much Love! Thanks in Advance !
Nina
2 likes, 15 replies
edith99275 nina20271
Edited
hi, Nina
you are going through perimenopause I have left arm pain can't sleep at night irregular heart beats, ringing in the ears your not a long burning in the stomach the list go on.
eleni1960 nina20271
Posted
Hi Nina
You are not alone and I have had all of the symptoms you have and many more. I am post menopause 5 years and I thought it would be getting better but by the time one symptom goes another one replaces it. At the moment I am struggling with feeling like I can't breath properly and tight chest. I have seen cardiologist have been to ER many times. Unfortunately menopause is a long journey for some of us and we just have to do our best to get through it. If you have had all the tests and nothing is showing then try not to worry and tell yourself it is just your hormones and hopefully soon it will pass. Unfortunately this is not always easy to do as our Anxiety takes over and makes it all so much worse. This site is full of ladies who are all going through the same things as you and you will find much reassurance here.
sandeep08592 nina20271
Edited
hi Nina,
you are not dying. I've had all those symptoms and more. I've done the same many trips to doctors. I've had endoscopy, fibroscan, ultrasound, CT, gynaecologist 2 breast appointments as breast were hurting all the time and found lumps in armpit and many more.
I was convinced my dr has left something I've had every blood test under the sun and finally after 3 years my bloods confirmed perimenopause! thank the lord.
Don't be afraid to go to the Drs and rule out anything sinister. You are doing the right thing.
I've had heavy periods all my life. But in the past 5 years they are full of clots and I cont leave the house for 3 days! I got offered the mirena. But too scared because of the side effects.
The only thing that has helped me is acupuncture. I cont take painkillers as ive got bad stomach issues from bloating to acid reflux and bowel issues!
My periods are manageable due to acupuncture.
I've also got the coccyx pain from nowhere! A kind lady on this forum messaged me and said she's had the same for 18 months and it went away all of a sudden.
I hope this has given you reassuarance. I get myself so anxious and feel worse when I find something new every bloody month. its relentless and exhausting.
nina20271
Posted
Thanks a lot Ladies for answering my post! I have period right now and I have this bad pain around ribs and back((( I have very bad cough always worse around my period and I am scared I have cancer in lungs((
I am so thankful I found you girls, I am not dying !! I am so happy I can sleep first time in 2 years first time without worries! Thank You!!!!!!
Anyone with cough? its not Covid , its since I got in this ordeal, just phlegmy sound but no phlegm coming out...
thanks a lot girls!
serena11274 nina20271
Edited
im 45 and my symptoms all started at 43, fatigue to begin with, then anxiety, shaking, tremor, rapid heart rate, heavy legs and limbs, muscle twitching, head pressure, brain fog, pins n needles, breathlessness, could go on, could not function, lost 8 kilos, have 3 children aswell to deal with whilst all this went on, have a lever arch file full from all the tests I had, I too was convinced I had ms or was dying, had hormones checked regularly but all kept saying I wasn't in perimenopause, fast forward to now, im 45 and only just started to feel half normal, still have odd symptom but no where near like the horrendous 2 years I went through, I feel I had a huge hormonal shift all of sudden and body went haywire, felt like I was going crazy, thats only thing I can think, your story is so much like mine, hang in there, I have just had to push through and hope as days pass I get better and better, I felt depression creeping in at one point as was so sick and tired of not feeling any better, I had to fight that off, hope my story helps.
nina20271
Edited
thank you so much! you helped a lot to ease my fears, I was also so scared all this was like a nightmare , I too have weird things still but feeling much better, at least I dont think I am dying or have Dementia or MS or ALS . So thankful for Life and feel for all patients who has terminal illness , 😦(( thanks a lot !
nina20271
Posted
I have such headache , I think Im having stroke... anything helps? will this go away ever? I cant take it anymoreeee(((
nina20271
Edited
I have such headache , I think Im having stroke... anything helps? will this go away ever? I cant take it anymoreeee(((
RACHELLYNN84 nina20271
Edited
Hi i am in the same boat i go to bed with headache and wake up with headache this as been going on for the last year. ive had a ct scan and came up nothing .I also have pain in throat fullness in ears and itch facial pain jaw pain tongue hurts tight chest chronic fatigue joint pain my mind feels lost the list goes on.
blood tests normal
x ray of chest normal
ct of neck and head normal
im convinced i am dying as i was fit and healthy a year ago and this last year as been a living nightmare.My periods are irregular and had an operation in 2019 to remove adhesions from a burst appendix when i was younger .adhesions was removed from ovaries and all of abdomen i believe from this op although im only 36 im in perimenapause .
nina20271
Posted
Sorry to hear you are struggling , it will go away I hope for us! Im 43 but all started around 39-40.
priya82066 nina20271
Posted
I have several of the symptoms you described and many others for which I have no answers. I can relate so well to the diaphragm tightness you explained , I have that too. I lost weight and I have depression and much anxiety. nothing on tests except for high cortisol. I am still searching for answers but nothing so far. internal shaking, tremors, palpitations, chest pains, head pressure, left side weakness , feels like they are missing something that i have 😦
nina20271
Posted
thanks answering my post, I am sorry you have to go through this. I am so scared sometimes, even I was told it is no MS or ALS , I still am afraid, my muscles kind of lost tone in calfs , I know hormones play big role for muscle to be strong but still I am scared. Hope its only hormones and it will pass, but sometimes I think Doctors are missing something.
RACHELLYNN84 nina20271
Posted
i feel the same not that i can get a doctors appointment to be seen with what is going on .And when i speak to them on the phone they make me feel i am making it up .I know how bad i feel day in day out i know my own body and know something is not right i spend so long on google trying to find my own cure i am exhausted of fighting the unknown and sat there thinking it must be something serious otherwise why would i feel so bad .
nina20271 RACHELLYNN84
Posted
Well, lets hope its only perimenopause going on and it will pass, if something else it will show up with time anyways. Feel better, please post is you will find the answers.
thanks
RACHELLYNN84 nina20271
Posted
i will do you too