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[Peterspots]

It feels like a burning nerve problem.  I dont know if its connected to my face but it is horrible and has really increased my worry

[Peterspots]

Hoping to see consultant Monday. He is a Maxilliofacial consultant. Had scan on jaw a month ago & bloods & still no answer. Thinking about taking cymbalta/duluxotine in January. I have tried for a year to find something to help & now with the added scalp & neck burning. I'm just lost. I don't think it's flushes. Started sequential gems even Friday so hoping that may help somewhere. Just feel defeated

[Peterspots]

I finally got my blood test and mri (jaw) results

the menopause ones were done but just because he was doing a group of blood tests

FSH 5.3
LH 14.4
Oestradiol 1754 pmol/L

The things that have show up are low ferritin, low iron saturation, low vitamin D and low parathyroid hormone. My calcium was ok though

Having a low parathyroid can cause problems with calcium and the symptoms are

Symptoms can range from quite mild (tingling in the hands, fingers, and around the mouth) to more severe forms of muscle cramps.  The most severe symptoms are tetany (severe muscle cramping of the entire body)

probably clutching at straws again.  if my clacium had been low too then it would have been more obvious it could be that

Seeing maxilliofacial man on monday but the jaw mri was fine so he is still sending me for a brain and neck mri

[Peterspots]

Hello Sparkle thank you for asking. I feel I'm not coping. I have struggled all year with this. Trying to carry on but I feel so overwhelmed today. The symptoms have escalated this month. My face is tingling, pressure burning and now my scalp and shoulders. I have seen the Maxilliofacial person and he diagnosed TMD and I just don't think that is right. I'm hoping the MRIs will be soon but have almost lost hope and I'm scared. I have so hopef
That I would have relief and I don't know how to carry on. I've lost so many friends this year and other than my immediate family people just think it can't be that bad she's going to work and I'm being akward if I don want to go out for drinks or go here or there and I just want to say please can you not understand how awful
I feel and I am so tired of putting on a front. I just want to sob at the moment. I really can't face this anymore.

[Peterspots]

I have husband, daughter back from uni & 16 year old. I can't understand how This is happening. The pain in my face now burning in my neck & shoulders & im starting to get shooting pains in my head. This can't all be from clenching. I will be 50 on January 7th & I planned to have a party & I had an account I saved up in but I'm not now. I can't bear to feel like this on my birthday. I look fine but I'm not. I have got so desperate. It's been a year & it's got so much worse this month.  How can I ever get better when nobody knows what's wrong. Emotionally I'm desperate.

[MIS71MUM]

Hi English Rose

I've read your posts and although I can't offer any help with the tingling but I also have low ferritin levels and low vitamin d levels.  Both of these have really affected my mood and possibly caused anxiety and depression. I also take Duloxetine too.  So if I can help at all or offer any advice, please let me know.

[carol100]

Hi EnglishRose
Do you still have this problem or have you found any answers? I ask because I have very similar symptoms which have gradually spread from my jaw area up to my left cheek and round the neck. I have ENT appt end of Jan and feel I  can't wait to find out what is going on as it is making me so miserable. My cheek twinges and My neck feels like it is burning.
Don't know if you still check in with the forum, hope so.
C x

[CLKD]

Neuropathy ? tingling and burning ………. nerves are 'funny' things and can be affected by lots of bodily issues which can take time to discover why.  Pain can radiate from the initial source which can make it harder to diagnose.  In the meantime the patient feels worse and worse because they don't get a resolution. Add muscle tension due to uncertainty = intensity of symptoms.

Maybe a Very Good Cry would help?  Bottling stressors wont' help!

[Peterspots]

Went to the facial pain clinic at Eastman dental hospital and they diagnosed TMD and said their main role is management of symptoms.  I can take noratryptiline for 6 weeks then go back. They have a psychology program to help manage the symptoms. I want a solution. That on top of my bladder pain is miserable. I've got an MRI on my face next Friday. Has anyone found a solution TMd (tmj but the joint is fine) my face is constantly twitching & my eye is bad at the moment. I stopped hrt thinking vagifem would be enough. My consultant has recommeded estradot 50 & utergesterone 100 every day to stop my cycle to see if it stops my bladder pain.

[Peterspots]

Bladder pain just keeps going up & down. The pressure is really bad behind my pubic bone. Can't understand how I've got to this point. Constant bladder pain & a face that won't stop twitching

[CLKD]

You are getting a solution - you have been listened to and management has been suggested.  Some pain becomes chronic but there are Pain Clinics often run by Aneastathetists.  [pity I can't spell  ].  How often do you need to take the medication?  Sorry but I can't remember if you have tried this one before?

There can be referred pain and if an area of the body tenses, it can cause twitching and annoyance in the surrounding area. 

As for the bladder, maybe discuss re-starting HRT to see if it eases symptoms?  I know I wanted a cure once I had plucked up the courage to ask for help I wanted to be better immediately - but the body doesn't play ball sometimes >sigh<.  Is there a continence nurse in your area?

[Briony]

You poor thing English Rose. So sorry you're still suffering. The Noretriptyline really helped a friend of mine with bladder/pelvic pain. I think she took it with Pregablin? (Or possibly she moved to Pregablin - I cant remember).
Hope you get some relief soon x

[Briony]

PS< I could be totally wrong, but isn't your estogen very high? (1754 pmol). Could that be exacerbating things? We need someone more knowledgeable than me, but I am fairly sure that a four figure reading is very high? Mine was 41 pmol, and I am not yet officially menopausal.


This is from GP's notebook (website):
      
Reference range (oestradiol)
 
   
pmol/L

50-200 males
70-510 females: early fol. phase (day 5)
390-1480 females: preovulatory peak
70-600 females: luteal phase
< 130 post-menopausal

[CLKD]

   Briony

[Peterspots]

When I contacted the consultant she just said the ratios where indicative of a hormonal problem.  When I started to hrt I think my estrogen was 300? I stopped the hrt because I thought it was high and now my bladder problem is worse.  Going to start on the regime she suggested at the weekend. I was hoping to have a period first.  I feel I am going backwards and have made bad decisions about the hrt.  the regime suggested is 50 estradot and 100 urogestan contiuously to shut down my cycle.  It is just so confusing .