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To scared to mention symptoms

Well since my neuro has decided, on the strength of a brain mri, that all my symptoms are in my head I am keeping everything to myself.

My husband has decided its definitely that so is clinging to it. I can see why and it would be much better if it was but I'm not sure.

As a result I'm too scared to say how I am feeling. The pins and needles are driving me crazy and I am so exhausted and as for the pain.... well I don't need to tell anyone about that.

I went to the supermarket with him this morning instead of doing an internet shop because my symptoms "aren't real" and I had to paste a smile on and pretend I was fine. I just want to sit and cry now.

This is the only place where I can be honest now.

crying1

Oh Nikki, this is so unfair! When I spent years (and still am) going for oodles of tests and nothing was found, I wondered if my hubby believed me too.

I hope you can find a way to talk to him and let him know how  you really feel. You need him on your side.

If that does or doesn`t work, thenyes, come and tell us here, yeh?

luv POllx

I can kind of understand it. While he was growing up his Mum worked in a hospice/ respite centre for MS and he has seen it at its absolute worst so for it to be psychological would be best for him

xx

But not for you, eh?

luv Pollx

Oh Nikki,

I'm not suprised that you feel the way you do! 

You can understand our other halfs grasping at any hope that one day we will be better, but do they realise thats all we want?!?!

I put a link on here yesterday that is quite funny in places but I think that if you could get your husband to cast his eye over it, it may just help him to relate to whats going on for you.

I'm also struggling to explain my symptoms in a way that others can understand. But to be honest thats really hard when I don't understand it myself. Brain fog etx makes it all very very difficult to articulate.

This is the most perfect place for you to air your concerns and fears!

Take a look at the link, it may be helpful, it may not, either way we are always here for you and most of all can relate to the frustration and fear etc.

Take care

Mandymoo xx

Hi Nikki

I feel for you, I am in a similar position. Undiagnosed by a second neuro I wonder if my hubby believes the symptoms or if he too thinks it is all in my head. It is a tough position to be in. Like you I have tried now to push on like nothings wrong and paste a smile on.

But nothing stops the symptoms. And I'm so darn tired.

I often want to just sit and cry so you are not alone.

I truly understand how you are feeling.crying1

Keep strong.

Cathy

I am sorry Nikki. Life has been so tough lately, hasn’t it? You do need your hubby behind you. Hopefully your GP will get you another appointment with a new neuro and things will move on.

Thinking of you,

Teresa xx

Ohh, that is hard. Best wishes.

Hi Nikki,

You must feel awful, and so alone, I too am not dx yet...I'm sure my GP and neuro think that 'its all in my head' but I know that its not....why would we just make things up....its not good when people just don't believe us.

Try not to let it get you down...keep fighting and pushing until someone (else) listens to you..as I'm sure in time they will.

Take care,

Wendyx

Gosh thank you all so much, it helps knowing others know what I mean. I'm going to talk to him later once the kids are all in bed and we can get some peace.

I feel very alone at the moment here.

I'm lucky that my GP is behind me but just need hubby now.

The amount of stuff I have going on at the moment I will be totally amazed if the neuro says I'm sane!!!

You are all amazing

xxx

Nikki Nikki Nikki - just because your symptoms are deemed not due to physiological disease does not mean they are in your head!! Have you not read www.neurosymptoms.org yet? It explicitly says the symptoms are real. It is like having a software problem not a hardware problem and software problems very clearly make your computer have symptoms and go wrong. 

Be kind to yourself and admit your symptoms - bottling them up won't help them. Big hugs darling xxxx

 

Well I’m sat here at this ridiculous hour just crying ( yes I know AGAIN!!) I chickened out of talking to my husband, I think partly I’m scared that he will tell me he thinks I’m making it up.
I have to be up for church in 6 hours and I can’t even imagine going to sleep now.

I am just so pathetic and I want the strong, happy and healthy me back. Even just a little bit
:frowning:

Hi Nikki,

My hubby still thinks i should be able to do everything i always have and as you know - i've had my diagnosis a few years now.

I went into a denial phase after dx but my hubby has been in this phase 7 years and i don't think he will come out of it!!!

I am struggling to keep up with the kids atm and he has not offered to help me with anything because i don't work so he thinks i should be able to do housework/shopping/cooking/cleaning/gardening and all thats involved with the kids.  I am exhausted and when i went to bed last night i felt that perhaps if i collapsed then he might take me seriously. He makes me feel guilty when i ask for help so i try to battle on.

Some people - no matter how much talking/explaining you do - just don't/or don't want to understand.

My mum helps me a bit but she is caring for my elderly gran so i try not to bother her unless i really have to.

It is a horrible place to be when no-one believes you - hubby/neuro/gp and it's a very lonely place to be also.  Keep posting on here so people can support you.

When you start to keep things to yourself - you start to get down or depressed.

Teresa. x

 

 

 

 

 

 

 

 

 

Nikki im so sorry this is all happening to you ((((biggest hugs in the world))) you can always come and chat to us.

xxx

Hi Nikki

Having spent the past week or so feeling so emotional about everything that is happening to me, I just want to send you some huge ((hugs)).

I think the problem is that when most people cant see a disability (such as a broken leg) it doesnt exist. Maybe your husband is scared of what is happening to you and therefore sticks his head in the sand. 

I think you need to have a chat with him, just so that he can help you around the house. Its not fair for you to go through this on your own and I am sure he wouldnt want you to feel so upset! 

We all need support at this horrible time, and we all need a bit of understanding, so bite the bullet and sit him down and tell him how you feel. I am sure you will find that he can see for himself you are not well.

Nikki, please pm me anytime, dont be upset and feel lonely. We are all here for you and I would be happy to let you have my phone number for those moments when we feel scared and alone. Friendships are so important at a time like this, and you have supported me for the past few weeks since I joined, so I am happy to support you.

Love Paula xx

 

Oh Nikki, I do so feel for you, I'm 65 and it wasn't until last year I was dx but had suffered different symptoms for more years than I care to remember where people thought it was 'all in my head'. Get the brochures from MS, show them to hubby, get him to sit down and go through them with you. Prove to him it is real. Maybe it's because he is frightened of the unknown, but let him know how you really feel. It's no joy being alone at a time like this, He needs you and you need him.

Sending you (((((HUGS and STRENGTH))))) to carry on getting him to believe you.

Janet

x

 

 

I know how you feel nikki .Im trying to plod along like normal at the mo .

I dont even want to mention my symptoms to my husband .He is very supportive, but i think even he has had enough of me sayinng about things.Its horrible feeling you have no one to talk to ,and thats why i like it on here as well .

I am off to a park for a picnic today with one of my kids,and my friends .I have just slept from 6pm- 6am and still feel shattered ! whats thatabout ?

My numbness has now spread up to my scalp ,which feels horrible .And my nose is stinging/burning/freezing one of these sensations all the time .I walk around squeezing and holding it all day , i must look a right prat lol.

My muscles in my legs also feel very tight and ache so much ,like ive run a marathon the day before .Horrible symptoms ,i hate them .My neuro said to email him about how im going with the pregabalin so i might do that today .Should be interesting waiting for some sort of reply !

If you ever want to chat nikki im always here,i know how you feel , 

Sam xx

Just read what other people on here have to say, we can’t all be mad or making up several of the same symptons?

I too am in limbo, clear MRI, dr says I just have to play a waiting game, starting to think she thinks I am making it all up!

Have been told that I have Raynards, which does account for some symptoms but not all, even Rheumatologist thought this and said I should see Neurolgist.

Thing is I think my son has Raynards too, but do not want to take him to drs incase they think I am just attention seeking!

My hubbie is understanding and says lets treat as though you have ME, and see what time brings.

Not doing too much and having rests is fine and helps with fatigue, but not being able to look after my children properly is not.

Take care and try and keep strong, we can’t all be mad can we?

Oh Nikki what a very sad place to be.

I hope you have had the courage to talk to hubby.

I can really relate to what Treek has said and to try and carry on as normal ends up with alot of unspoken resentment building.

What you used to do all day now takes you all day to do---and you are exhausted by the end of it.However much you try your symptoms stop you from being the person you were,whatever the cause.

Your life has changed so between you there has to be adaptations made to expectations and those expectations that you both have can only be addressed when they are spoken.

It may not be a pleasant conversation but worded as simply as what do you expect from me on a day to day basis may at least get everything out in the open.

Take care.

Pip

Hi.
This is my first time to the forum. I was taken ill in January and spent a week in hospital. I have had a lumber puncture, two MRI scans and the eye test with the checker board and all have come back normal. I am still signed off work and am feeling very down because although I am better than I was, I am stil not better. The hospital said that it was a possible MS attack based on symptoms but I haven’t had a diagnosis because the tests are clear. I feel like I am having another attack at the moment with burning feet, fatigue and I constantly tremble, like I am on a train but luckily I am not in pain apart from a muscle spasm which catches me in my back. It’s so nice to read the forum to know that there are many of you out there feeling the same. I think this is really going to help me.
Kirstie