Sorry in advance for the long post but I hope there are people out there with similar experience who can offer some sage advice please?! I was diagnosed back in 2010, admittedly after a second failed LP (Charing Cross is such a great hospital) so not clear cut and it’s only now that I think I am starting to see things properly happen. Or am I? I have had a few ‘odd’ things happen over the last 12 months or so but relative short (2-3 weeks) periods of feeling a kind of non-descript crapness. I blamed it all on low-level MS that I was going to speak to my consultant about at my annual check-up.That all changed in Feb when I went on a business trip to Colorado and started to feel pretty unwell. Possible combinations of virus, hypothermia, dyspepsia and the old faithful fallback of MS were on the cards when a new player came on the scene: anxiety. I went through a period of two weeks with occasionally intense chest pain and thought I was about to keel over with a heart attack. At that point I learnt about the MS hug but that didn’t explain it properly, but possibly partially. After being checked out in a chest clinic, and two full blown panic attacks later I realised much of it was in my head. All of a sudden, after that lightbulb had gone on, I started to feel quite a lot better. I was offered drugs (betablockers) but haven’t succumbed so far. I am still getting twinges on occasion. However, I am still blaming much of my current pain (chest, back, digestive) on the MS. I had another MRI last week and am seeing my consultant next week. But now I am becoming less sure that it isn’t pretty much all to do with my mental state. I think I have probably been stressed ( whatever that really means) for a couple of years whilst managing a fairly large and complex project. But I didn’t really register the stress until the project finished in November. Christmas was pretty crap and with a number of other changes going on in recent weeks, I’ve come to realise that I was in a pretty bad place in my head (although I don’t think I am actually suffering depression). That has confused my whole view of what is going on. Is it the MS or is it stress/anxiety etc? No-one seems to be able to give me any definitive answers which runs contrary to my very being. The problem is that I am now going to have the conversation about therapy with my consultant. I have studiously avoided this so far; not really sure why, I guess probably I was still in denial? I don’t like taking drugs anyway and the prospect of having to be taking something regularly for the rest of my life is terrifying. I don’t know what to do for the best, particularly as my current anxiety still remains random and inexplicable and a decision-influencer. Any advice welcome… Thx
Many of us with MS - are prescribed Amitriptyline.ln a fairly low dose - it does help. l take 20mg at night - and l feel it helps me relax more and sleep better. Like you - l would not like to take any meds that have strong side-effects - or become reliant on such drugs.
Diazepam[Valium] is one that you can become addicted to - as it is really only for very short term use.
l do take a high dose vitamin d3 - apart from being essentail to us with ms - it also helps with stress/depression and hypertension.
Vitamin b12 - helps as well. lts worth googling ‘vitamin d3 deficiency ms’ and vitamin b12 deficiency ms to get the information you need.
l have had ms for 32yrs. And l find l have to be my own ‘-expert’ as l have yet to meet any Dr/Consultant who has been able to give me any help.
For about 6yrs - l have been taking LDN. Which is no cure - but it does help me feel more positive. lt boosts your endorphins - gives you a feel good factor. But do look up LDN for yourself - ldnresearch.org all run by volunteers.
Although tests showed l do not have a gluten allergy - l do find l am far better cutting out all grain from my diet - and also very little sugar. A heavy carb meal will sap all my energy.
So there are things you can do for yourself. And it does make you feel more optimistic when you feel you are doing something yourself - and not getting negative reactions from the ‘medics’.
Hope this helps -
And keep smiling - fix a grin on your face - it works.
Hi Optimistico (good name!)
I suffer from both MS and anxiety, as do many people. This is a complex issue. There is evidence anxiety and depression are more common in the MS population than in society at large, but it’s not always clear which came first: the chicken, or the egg! MS-related hanges in the brain might actually cause depression and anxiety, OR someone might be depressed and anxious simply because they have an incurable disease, and various degrees of pain, discomfort, or disability.
To further complicate things, stress or an anxious state tends to exacerbate MS symptoms. So it may be an artificial divide to ask which is causing what. Not only might the anxiety be part of the MS, or related to it, but it might also be causing or amplifying symptoms.
As an example, my legs go weak if I have a stressful phone call! Before MS, although I was an anxious person, I wasn’t so feeble that I would literally go weak-kneed at times of stress. I do now! I had a lesion in my spinal cord that made my legs weak. That is largely healed now - it was more than two years ago - but still, at times of stress, my legs go weaker than they used to be. So if I think about what’s doing that: anxiety or MS, my answer has to be: Both!
Tina
x
well said tina,you really do come up with some good answers 
I have a feeling that anxiety may increase body temperature slightly? Leah
One thing that will go against your grain is living with uncertainty, you will never know whether its ms or anxiety or both, I find best approach is to accept its both and decide for myself which is the most troublesome at any point in time, that way I have confidence to apply my own coping strategies to see me through. If I think it’s an ms symptom then ill work round it with excercises or analgesia or rest and avoid any activity that might make it worse. If its anxiety I will use relaxation, excercise, mindfulness meditation,massage, music etc etc. it takes a lot of learning to get control of anxiety and symptom management. I found CBT a tremendous help and have avoided any major medications, have used a small dose of amytryptilline at night and now use just a small dose of pregabalin at night. Nothing except vit d and b during the day. It’s really important to sleep well if you can.
I was told recently that my ‘word loss’ was probably more anxiety related then MS related as I was doing it more when I was stressed when supplying an answer. However I think I also do it when I am badly fatigued from MS so I think I do it for both reasons. Like others have said I think the whole subject is just so intertwined it just can’t be untangled, and you just have to treat the whole of you kindly
Hi you`ve had some good replies, with advice and suggestions as to how stress can affect MS.
I think you are going to have that more frank and open conversation with your neuro, when you next see him.
Our minds can be our own worst enemy. But going round and round in circles mentally, and getting nowhere, will only emphasise the whole issue.
If it does end up with you needing certain medicines, you can try them and if there is no improvement after a decent length of time, you can always come off them,with supevision from your doctor, of course. it is never wise to just stop taking any meds.
Good luck.
luv Polx
Hi Op
I take mertazapine & diazepam (spasms & anxiety ) mine was brought on by my lifeboat days , nightmares of folks we never found coming back to me in my dreams asking why i left them out there & various others that i can’t talk about yet nor would i discuss an individuals injuries on a public forum as id feel disrespectful of them that have passed.
The anxiety part of mental health is horrible & tbh drugs are no cure but what they do is great giving you breathing space to try & make sense of it all just remember anxiety is a real illness & its symptoms are real too if you bury your head like i did at first it only gets worse , seek help get treatment and overcome or at the very least learn to live with it at least taking the drugs gives you a fighting chance to work through the causes & try to file them back where they belong or in your case learning the triggers & developing coping strategies .
Hope you get sorted asap respect
sheep
Thanks all for the comments. Had a couple of days to mull over things and I think I need to sort my head out before I broach the knotty issue of DMDs. So that ‘frank and open’ conversation with the neurologist is less likely to be quite as such in nature. I don’t think I actually really know what a relapse is or at least my symptoms don’t really tally with what I THINK one should present - feeling a bit crap for a few days doesn’t seem to fit the bill. I need to clear the anxiety out of the way (if I can) and see what I’m left with. Denial? Maybe (depends what the latest MRI says!) but I’m seeing it more as pragmatism. I still feel like an MS fraud - radiologically speaking, I have MS; clinically, I haven’t got a scoobie.