Forum

Health anxiety and MS

I suffer from Health Anxiety and like many others MS is one of the biggest fear.

However from what I have read in the MS forums I’m getting an idea that MS is not that “bad” and that people with MS actually are enjoying the life more that those with HA. Is there some truth in this? Or is it just a wrong impressions, since people with HA complain too much, while maybe the people that are active in MS forums have mild cases and the severe cases don’t post that much?

Thanx for reading

I think you will find many people on here have severly restricted mobility,other significant health issues that affect general quality of life aswell as people like me who have had life changing issues and some with mild annoying symptoms.

I come on here both to ask questions from people who know what its like living with ms,and hopefully to offer a cyber shoulder to those who need one.

You learn who is expert in each area ie poll with direct payments.Rizzo with the technical stuff and it helps to know that someone can explain neuro /medical speak in proper English.

I was relieved to find my dx was not life threatening and I think its up to you as an individual to get out of life what you want.

Some people cant cope with their dx and others just make adaptions as required when a problem rears its head.I think the positive spin on this forum helps people realise its not the end of the world and points us to the services that can help you maintain the quality of life and independance level you want.

As I have written before my ms means I’ve lost my job,but my garden is fantastic and when I want spuds/veg/salad I can go and pick my own thats fresh,and has only cost my time not my money.

Pip

Thanx Pip for answering. I’m new to HA and that alone has been tought to deal with. Add to that the possibility of MS (or worse ALS) and sometimes things look pretty black. However when the anti-anxiety meds are working everything is more positive and doesn’t seem insurmountable.

MS is massively variable. At one extreme, there are people who don’t even know they have MS because their symptoms are so mild. At the other extreme, there are people who only live a few years post diagnosis (MS is not considered a fatal disease, but it kills nonetheless). The majority of us are somewhere in between.

Do we enjoy life more than people with HA? I have absolutely no idea, but I would imagine that there is some benefit in knowing what’s wrong with us and having the support of medical teams, meds for symptoms, etc. However, you should not underestimate the difficulties that MS can cause: pain, fatigue, bladder and bowel incontinence, numbness, swallowing difficulties, vertigo, spasticity, emotional and cognitive problems, blindness, epilepsy, sexual dysfunction, etc. Yes, we learn to manage a lot of this, but it can be incredibly difficult at times. Every relapse takes something from us. Every year takes something from us. We learn to reinvent ourselves as things are no longer possible: change hobbies, change jobs, change friends, change houses, etc. Slowly, our world becomes smaller. It’s possible to adapt and find joy in the new things, but it’s never easy.

But it could be worse.

We are still here. We have a challenging life, sometimes almost impossible, but we can and do learn to manage symptoms and get the most out of our lives. It may not have been the life we planned, but it can still be good. That’s why I always say on here that MS is not the end of the world; that we can still have long, happy and fulfilled lives: because the vast majority of us will live a normal life span, see our kids grow up, hold our grandchildren, travel, party, laugh, love,… A lot of us do it with wheelchairs and crutches, wearing continence pants, popping pills for pain and spasticity, etc, but we do it.

As far as who posts on forums like these, it depends on the forum, but they are not a good representation of people with MS because most people with very severe MS will not be using forums because they won’t be able to (although their carers might) and most people with mild MS won’t be using the forums because they don’t need to. Of the rest of us, only a tiny proportion use forums (remember that there are somewhere in the region of 100,000 MSers in the UK) and we are the ones with the internet savvy and the time. One thing is for sure, the people who post on here do not all have mild MS; many are very badly affected. Perhaps, as you suggest, we just don’t complain as much.

Karen x

Wow Karen

I read this and had to comment. It’s very inspiring and so true what you’ve written - that every relapse takes something etc. I write in my spare time ( maybe at some point I’ll make a novel out of my journey to help others who knows) just what you’d written struck a cord.X

I was hoping you would comment Karen as I knew you would put it far better than me.

As you say…my ability to express myself is declining rapidly and is one of the reasons I like to post,to push myself into communicating.It does hit you in black and white when you notice it deteriorate.

Pip

I suffer with HA, general anxiety, panic attacks and I’m awaiting my MRI etc for confirmation of MS as my neuro believes I am showing all signs so I guess only time will tell if it does get confirmed for me as to how well I cope with that but I haven’t coped well with all the others but I’m hoping that if I have a reason for my physical symptoms then it may well help me ?

Sorry to hear that you suffer from anxiety…

If you don’t mind, what are your symptoms that neuro believe it’s MS?

Thanx

I’ve replied to your PM but as I said with HA it doesn’t take much if someone mentions a symptom to you, you quite easily start to feel it so please don’t read too much into how I am feeling & keep positive

Please be careful what you wish for!

Alison

x

Comparison of health conditions is never helpful in my experience.

As we all deal with them in our own way, who knows whether what I am dealing with is better or worse than what you’re dealing with.

Some health conditions make dealing mentally with them difficult. I am fortunate in that I am able to focus on what I can do rather than what I can’t, others aren’t able to do this.

HA seems to make focussing on the positives difficult so maybe in that sense for some people it is worse than MS.

Hi, it certainly has been interesting reading your post and its replies. As always, Rizzo (Karen) has given a full and well explained reply. Pips words echo mine too.

I just want to add that as folk in everyday life differ, so do those affected by MS/undiagnosed (me for eg).

Life with a severe neurological condition like MS, is still a life worth living. ive had to adapt hugely, but nevertheless i still want my life. I am saddened by what ive lost, but then Ive aslo gained so many things and friends from having whatever it is Ive got. I`ve learned not to waste precious energy in wishing for something which will never happen. Instead I use that energy by doing or finding out how best to help myself.

There are good souls out there who have made my life better than it might have been.

My slogan is; I may be broken, but I`m still here.

Best regards to you,

Polly xx

Hi everyone, I feel ignorant asking this, but what is HA exactly? I have suffered with anxiety in the past and I have noticed it has reared it’s head a little of late- I am expecting a MS diagnosis on monday and am on a second relapse in two months. Naturally it’s stressful so I am keen to understand the difference between generalised anxiety and health anxiety. Thanks! Stardust x

HA (Health Anxiety)- with this people tend to focus completely on their health and are continuosly anxious about it, fear they have every illness going, etc I’ve gone through the complete range from brain tumour, intracranial hypertension,MS, ME and alsorts of others. Every twinge I think i’ve got something else wrong & turn it into a huge episode of panic where as with generalised anxiety you tend to be anxious about everything around you & what is happeneing, etc Hope that makes sense ? x

As a person who has never experienced anxiety of any sort really I do not wish to offend,it is curiosity about something I do not understand but appears to be a common problem.

Is it something that can be traced back to one particular event,or does a small event snowball? When you are then dx with a condition does that then override all the other health concerns?

As I say please dont be offended,but if you google it its not the same as asking someone who suffers with it. Much like on here and talking to the ms experts.

Pip

People with MS suffer from anxiety and depression as well. I don’t feel that we are happier than any other group of people with a neurological disease. Is MS that ‘bad’? Oh yes. It damn well is ‘bad’. It is horrible, cruel, painful and robs us of our dreams and dignity.

We have horribly miserable days filled with pain and those of us with a relapsing type, feel great fear that this may be the MS attack that robs us of something significant.

We also have good days where we feel (on our terms) pretty good, despite the pain/incontinence/wobbly legs.

There’s no comparison. You either have MS and anxiety or you MAY have MS and suffer from anxiety, or you don’t have MS and suffer from anxiety.

Are you having tests for MS?

If so, I’m sorry for this post, but if you aren’t then your observations are rather inappropriate.

The anon is because I really don’t want to be flamed by others. MS is wreaking havoc in my life.

Hi Matrix,

I wonder if “MS is one of the biggest fears” because so many MS symptoms can also be sensations that perfectly healthy people can experience too? Everyone gerts pins and needles or cramps for example so if you are feeling particulary anxious about your health and google theses symptoms MS is going to come up as one of the possibilities.

I am struggling with your comment that “that MS is not that “bad” and that people with MS actually are enjoying the life more that those with HA”. MS is such a variable illness as Rizzo so eloquently explained but to suggest MS is not that “bad” and that people with MS are enjoying life more than those with HA might get up some people’s noses.

I am trying to give you the benefit of the doubt by assuming you don’t mean that people with MS are not that badly off (which is how I am interpreting it) and I am hoping that you mean that people with MS (on the whole) have developed better coping mechanisms than people with HA.

This I would agree with. Having suffered from anxiety and panic attacks in the past I know how awful they can be but I also know how they are part of a maladaptive coping mechanism and how with good Cognitive Behaviour Therapy and hard work it is possible to bring about significant change in your thinking and move past this phase in your life.

Sadly with MS you can’t get rid of it; it isn’t going to get better and for most people it is going to get worse over time. How badly affected each individual will be is impossible to say as giving a clear prognosis with MS is not possible so there is a great deal of uncertainty in living with MS.

I don’t know how “badly” off someone needs to be to meet your idea that people aren’t able to enjoy their lives but to give you some clue I use a motorised wheelchair to go any distance greater than a few metres, I get so fatigued I sleep for several hours every afternoon from just doing the school run of a morning and having my shower and trying to do one or two small chores. I have severe, intractable central pain and on average spend 3-4 weeks every year in hospital. I have bladder problems, swallowing problems and currently only have 40% of vision in my right eye. I need a carer 5 days a week and to top it off I am a single mum. Do I enjoy my ife? Too damn right I do. It is the only one I have and I am not going to waste it by sitting around feeling sorry for myself or imaging the worst.

Carpe Diem and suck the marrow from life.

And at risk of getting my knuckles rapped by the Mods… Don’t be so bl**dy offensive to people with MS, learn to deal with your own condition of Health Anxieties without coming on here and assuming you know how MS affects our lives.

Belinda

I believe you are a troll and have posted this thread in order to wind up people with a serious, degenerative and often life limiting (in terms of quality and years) condition as described by Rizzo, Tonto, Brog 64 and others.

You have health anxiety – a sub division of OCD and whilst you have my every sympathy please don’t come bleating on here that those who post on MS forums ‘don’t have it bad’ and that we ‘enjoy life more than those with HA’, this is offensive and grossly inaccurate.

Maybe we realise that our bodies and sometimes our minds are deteriorating and have decided to fook it, seize the day, bloody get on with it, because we have no other option.

I suggest you seek advice and support from sites such as http://www.anxietyuk.org.uk/about-anxiety/anxiety-disorders/health-anxiety and perhaps look into Cognitive Behaviour Therapy – you have options, wake up to them, some of us don’t………

I don’t think the original post was meant to offend as it has done as the poster does say that those with HA complain too much and was it a wrong impression that they had picked up as the MS forums aren’t like this ?

The way I see it as I’ve got HA and many other forms of anxiety and panic attacks & I am waiting for confirmation of MS is that those with HA dwell on the symptoms that aren’t real far too much (I’ve done this) and those with MS, probably, correct me if i’m wrong, think stuff this yes its utter rubbish but you know what i’m going to do my utmost best not to let it control my life in every way & will do all I can to carry on as normal as I can, so yes they will moan if they need to when things are bad BUT they won’t moan constantly like a HA sufferer.

Hope that all comes across as I mean it to

Becca, the way YOU explain your way of dealing with HA and possible MS are worlds apart from what Matrix was saying. Thank you for your explanation and I wish you all the best but not everyone with HA is as nice a person as you appear to be :slight_smile:

I agree with Anu, Matrix comes across as a troll, winding people up on purpose.

Cheers and all the best for your test results,

Belinda