Dentists really scare me and as I tried to overcome my deep rooted fear for 2wks I did attend! I survived but was very wobbly after the shock of it all!
My partner looked after me and obviously aftr the anaesthetic wore off my mouth was incredibly sore+it really felt my gums were experiencing tooth pain? No pain before so it did shock me it was so severe! Living on pain relief for mouth which is helpful, I am very concerned about my body weakness...
I feel as if I can't stand, can't lift my arms to my mouth to feed myself or do anything at all... It comes and goes but when the weakness is so consuming I am frightened!
Normally I function with frequent rests and yes life is limiting but I manage with paid help to continue independently but when the total weakness descends I feel I should move into a care home!!! This is just too scary... If I could rest 12+hours without getting hungry it might improve but eventually I hv to just eat what's around me to survive...
I am very frightened!
Even typing this msg has taken 6hrs of resting to operate mobile... Is it just trauma of dentist and just accept that it's going to take much much longer than I imagined?
Thank you for reading this...
Wx
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Wobblygirl
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Hi, I can’t begin to know what you must feel like at the moment. I do know that a trip to the dentist takes it out of me just because we kept our old dentist when we moved here so have a 50+ mile round trip before any treatment! It’s a while since I had an extraction though and I can understand it’s worrying if you’re not able to eat. Can you get hold of any complete food protein shakes. You must eat or you’ll just get worse. I really don’t know what else to suggest because it’s obviously been a shock to your system. Even routine things like a trip to the dentist turn into a nightmare. Have you been given a mouthwash or are you regularly rinsing your mouth out with salty water to help with the healing? I know the dentist might have a fit but I know someone who uses honey for anything tooth related! I’m sorry I can’t be of any more help but if you get any worse, please seek medical help. When my son had Covid, he couldn’t eat or drink and ended up in hospital on a drip. Maybe you could find a chemist that’s open today and give them a ring for some advice. Typical when we have a long holiday weekend that this should happen. I hope you feel better soon and take care. Nic xx
Thank you for your support. I have been rinsing my mouth with saltwater when I remember...However getting the right temperature is imperative as all my gums/teeth shout out if too cold or too hot???
Hello, have you ever been checked out to make sure that you don’t have Myasthenia Gravis? It IS very rare but your description of the weakness sounds just like me when my MG is flaring badly. Doctors don’t routinely do blood tests for it (in fact, most doctors don’t know anything about it except what they touched on in Med school) but it might be worth requesting an AChR blood test just to rule it out (although you can still have Myasthenia with a negative blood result, blood tests are the most common form of getting a diagnosis). I have Fibromyalgia as well as Myasthenia so it is definitely possible to have the two illnesses together.I really hope that you start to feel better soon - Sue x
Thank you I will look into that...The weakness is frightening me but there's no body pain or aching! I try and space a few tasks out earlier in the day but just get empty and hv to lie down with heat... Always feeling so cold too!
Thank you I trust you're coping with all yr traumas??? X
The experts say that you do not get pain with Myasthenia Gravis (although some of us do beg to differ but the disease manifests itself slightly differently in each person although the weakness is uniform in the Generalised variant of the illness). It can be triggered by lots of different things - my main triggers are exercise, stress and temperature changes (below 10°C and above 20°C). Unfortunately I struggle a great deal these days due to the fact that, as well as Myasthenia and Fibromyalgia, I also suffer from osteoarthritis, inflammatory arthritis, IBS, ulcerative colitis/proctitis and Sjörgen’s syndrome … my husband says that I am greedy to have all those LOL! They mean that I take so much medication that I rattle when I walk 😉 I hope you get to the bottom of your problems as soon as you can. There is nothing quite so scary as your body not obeying the commands you give it. Take care xx
I really crashed Elaine!Sorry I couldn't respond earlier but just nothing was available to even allow me to stand or walk or type.
V frightening indeed!!!
I did feel a little better at weekend so for the communal Jubilee party I got up earlier than usual and made a few simple items of party food to share...
Really simple you know boiling eggs from the hens, making tiny toasts to decorate attractively+slicing scones for jam+cream. Nothing fancy and I rested between every process... Really measured my energy.... for once!
By 3.00 I admit I was tired in my back but went out to chat!
Chatted 4 2hrs with neighbours trying to make new folk comfortable and later I didn't move for 6hrs! Watched concert+then pageant next day with a really long sleep in between and just couldn't move! I rarely socialise so I think that 2hrs
was just too much???
Back to feeling limp for days...
Couldn't wash or dress so felt ashamed too; not that my partner complained... I do try and look respectable when I'm with him and crash during the week but the extraction meant I was totally visible for 10days and I just couldn't pretend...
I feel totally condemned to having no social life at all!!!
I really don't know who I am any more???
Thank you so much for yr enquiry I really am grateful...
You're very kind xxx
PS
mouth has calmed with time and special toothpaste for sensitive gums but side of extraction is still very raw. Continually on the soft diet!!!
Oh my goodness Wobblygirl, that's so hard and as you say, so scary. I'm sorry for all that you are going through. Don't worry about not being able to respond to me. I totally get it.
I'm glad you were able to get something from the Jubilee weekend but it sounds like you were thinking more of other people and their comfort rather than your own needs? 2 hours ended up being more than you can give but, hindsight is a great thing. It can be difficult to get the right balance sometimes. Please don't feel embarrassed or ashamed of not being able to get washed or dressed. I totally relate and with not being able to wash my hair.
I have an emergency kit of baby wipes, mouth wash and dry shampoo. Even then there are days when I can't even do that much! I accept that this is how it is sometimes.
I relate to ending up not knowing who you are. This horrendous illness strikes at your very identity. You lose the person you were before you got fibromyalgia and for me, I had to grieve the loss of the person I used to be. However, now we can choose the kind of person we want to be.
Also, we can be at different times somewhat socially isolated which if you like people, is tough. I'm sure you will come through this really bad flare. But you are precious and deserve to take care of yourself and give your body all the rest it needs.
As to your thanks, you are so welcome, I care about you, which is why I wanted to know how you were. I'm happy to hear that your mouth is calming down and although it is taking quite a while to get over the extraction, it will heal, just needs a little time and care.
My massage therapist, Emma, says you can have a healing crisis where things get pretty bad because of the changes in your body. Maybe this is what's happened to you? Though it's really hard it is a healing process going on.
I've been meaning to reply to you for ages... Not only to say thank you but to recognise how accurate yr assessment was...
I am or used to be a 'people person' always caring for others +being sensitive to their needs. I chose a caring profession and then had to care for my elderly parents+my best friend who all died. I wanted to care and there was a dreadful price even then with depression +a breakdown eventually. I find self care v difficult to manage...
However that Jubilee party made me act with my old head and not react with my fibro adapted existence.
It was very telling...
I just couldn't stop myself looking after everyone else with no care for myself whatsoever...
It was quite a lesson???
Last week in a family celebration I decided to react slightly differently... I put myself first and didn't try very hard to socialise with everyone. I chatted to the teenagers who were lost+bored by wrinkly company but not much effort with the rest of them...
I discovered without my initial interactions no one in my family tried to converse with me either!!! It was a very disappointing fact to discover.
My sister who's nearly 20 yrs older than me has never been that close+we had different views abt our parents as we were brought up in different eras! I enjoy her daughters but we hardly see each other unfortunately...
Family life becomes hard and with absent friends too?
It's a lonely existence apart from some good e-mail friendships...
Thank you for recognising my type of personality and maybe yours too?
My pleasure, and yes, it's very like me and I have had to work and be more intentional to change. Therapy helped a lot and this group too. I realise that self care is not selfishness, especially with an illness like ours. It really pays to listen to your body and give what it needs.
It helps to let go of other people in the sense of focusing more on them and their feelings and opinions than listening to and being aware of your own. Letting go of guilt and shame is really important too. We've done nothing wrong but be ill.
I've had the experience with family that when I didn't make the initial communication there was nothing there. I used to wonder if this meant that there was no real relationship if there was no give as well as take. It was very upsetting. My parents who are both gone now, were the worst.
I hope you are feeling better than you were Wendy. Take care xx 🤗💕
Sounds like you are in shock and having a panic attack I should see your doctor have your self check out to help relieve your anxiety this may help you move out of the shock I had an abscess a few weeks ago I have no dentist like gold dust here but I do recommend salt water rinse about 4 times a day look it up on internet or ask the dentist for amount to mix with boiled water when cool rinse
The running up thought of going to the dentist the adrenaline of it all now has left you and I think you may be experiencing a come down from this
I had similar experience in lockdown I had a panic attack in the night never had one before but I just think my brain had overload with it all and I also at the time had a lose tooth and could not get help for it and was relieved when it came out I was so scared of it coming out when asleep and chocking I had worked my self up over it
But my mother had a (saying the closer to the brain the greater the pain ) so try thinking about your body as a whole and do what I do talk to self sounds like I am of my rocker but I find this helps I ask my self things like is my arm broken: no
Did I bang it :no and so on I eliminated and tell my self this we all have anxiety and other issues but sometimes just looking inside of ourselves can be helpful
I am going to start one of for you
You have been a amazing just getting your self into the dentist
This time next week you will be feeling good the experience will move further away from you in time so give your self time look at all your discomfort and each day recognise the bits that don’t feel bad even if it toes and say my toes feel good my fingers feel good the more you concentrate on the good bit then the not so good bits start to fade at the moment you are giving in to your anxieties by reinforcement of concentration of the bad bits Yes I know the bad bit make you scared but that’s how anxiety works on you we all have anxiety it’s not a bad thing but sometimes we need to manage it there are lost of help my friend Sam loverly lady down to earth samanthagarner.co.uk/ Copy link into browser
She has some free management of anxiety podcasts and on Facebook and own website she also covers other subjects she also has a good voice to listen to she makes me feel ok to be me try it I may help feel good about your self and don’t beat yourself up you are a great person smile 😃 smiling releases good endorphins into the brain find a good comedy start 😂 out loud flooding the brain x
Bless you. I'm very grateful for yr input...I did wonder whether it's been shock all week? So cold and just so empty even if I just talk to someone...
A neighbour saw me sitting in sunshine and I responded for about 20mins and afterwards just felt like collapsing!!! Could hardly walk indoors later...
I am frightened as I was able to do so much more few wks back???
My partner is providing meals now and I can't even walk to the table! Obviously this is at the end of the day so I'm eating off a tray under a heap of blankets and a heated wheatbag! Looking so much like the invalid???
Where does stamina hide???
Thank you for yr kind words I really appreciate yr affirmation. You sound like a really lovely person...
Hi I was going to mention your symptoms sound like Myasthenia Gravis as someone has already suggested. I was originally diagnosed with fibromyalgia and went on to be diagnosed with myasthenia. Might be worth asking for a blood test. It would be a neurologist that you would need to see. If u had an anaesthetic, depending which type u had it can make myasthenia symptoms worse. If your breathing starts to be effected don’t delay in getting advice as this is also a symptom of myasthenia and it can be serious. I hope you feel better soon and get to the bottom of what is causing your symptoms x just to add, with myasthenia your symptoms tend to improve with rest and get worse when doing something repetitive which could explain the fluctuations in energy.
Thank you for yr input and apologies for not responding b4! Just so empty of any strength and it feels like standing is too much!!! I did attempt to join in a Jubilee picnic on Sat but that put me back further again...Trying to rest full time now with occasional walk into garden. My cleaner came yesterday so everything is clean+hygienic again so resting becomes more tranquil.
When I'm strong enough to e-mail Dr I will raise all these points and she'll probably do nothing but I feel I must flag up these extra symptoms...
Hi WG, I am sorry to hear you are having such a rough time. - There is something you could try that might empower you to talk yourself through some of the emotional trauma around your pain and suffering and that is EFT. It is known as Emotional Freedom technique and you can do it lying down and just about anywhere. - If I put a link it will probably not work as I am a bit of a techno klutz and have not yet successfully posted things here - However, if you type in - Jessica Ortner Youtube The Tapping Solution - it will come up with more than one link for you to choose. She is very encouraging and her technique is easy to pick up. - The technique shows people how they can repeat their own tapping statements, changing the things they feel they need or want to say about how they feel as new thoughts pop into their minds. It's sometimes very revealing and can release tears or other emotions. Tapping through these can help lessen their emotional impact freeing you to know how to deal with the pain and exhaustion itself. What she teaches in her short video is all you really need to know to treat awful feelings about things on an ongoing basis - so you needn't pay out for anything or even buy a book. Just browse. I hope, something of your pain goes down a notch. Jo
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