Invisible symptoms

Hi everybody, my name is Dee, I’m 57, and was diagnosed 30 years ago - 10 months after the birth of our daughter. My husband had cancer at the time – he was 26 and it was a very stressful period, which triggered the MS.
My RRMS was completely manageable until 15 years ago when SPMS kicked in. I’ve managed quite well until recently but am now really struggling.
I too saw a neurologist privately due to the waiting lists, and he told me he couldn’t give me any new drugs to manage my day-to-day symptoms. In the last month my sensory pain has intensified, as has the spasticity and stiffness in my back and legs. I can just about manage to stand and transfer, but that’s it. My fingertips are now feeling numb/pins and needly, and arms weak. I’m on prophylactic antibiotics for UTI’s, and have weird popping noises in my head and tinnitus. An audiology test came back normal. It’s so frustrating!
I have never used a forum before, but I really feel I need to connect with people who understand what I’m talking about. I’m so low, with no hope for the future.
Can anybody tell me how they cope – I make as much effort to socialise with my husband, but it’s so hard and I dread it. I have no motivation to get out of bed and whenever I do there is so much effort involved and subsequent pain. I spend the majority of my life sitting down, and having to rely on family for cooking and cleaning. I have always been a control freak, so this is really messing with my head. How can I get out of this black hole? Can anyone relate to this? It would be good to talk to somebody who understands about invisible symptoms, and depression. I’m so scared of what’s to come.

Hi there Dee,

I just wanted to reply as I can hear your pain and worry. You’ve done so well all these years to manage your illness. I am not diagnosed, so can’t offer you practical advice, I just wanted to say I hear you and I hope you feel more positive soon.

I can relate in part, insofar as I’m currently not able to do a great deal due to fatigue. I’m having to rely on my husband to manage the house and kids to a fair extent which is hard on him and I feel guilty.

So far I’m hiding my problems from the kids but they are noticing I’m in bed/lying down a lot more than I used to.

Anyway, I just wanted to acknowledge your post and say welcome. There’s a lot of good folk on here. I’ve been massively helped by talking on this forum. It’s apparently a lot quieter than it used to be tho, so it may be a while before you get replies at times.

Take care.

We’re here for you. Xx

Sometimes we just want to go into a dark room and scream. I’ve had MS for 30 years mostly invisible symptoms but now can’t walk.
Things are tough, especially this last year.

Just wanted to tell you that I’m thinking of you. Yes I sit down nearly all the time now. I have a small mobility scooter in the back of my car with a hoist.
I love nature so my happy place is by a river or pond, a National Trust garden . Lots of lovely things to see, nice tea rooms and good facilities.

Take care.

Hello Dee, thank you for sharing - and for trusting your instinct that it would be good to do that in the Forum. I find that being outdoors helps me even if only to sit outside for a while and pay some attention to the natural world. I also find that keeping some kind of journal helps, the process of putting my thoughts into order seems to help me stand back from them; sometimes seeing things in a new perspective.

Thank you George, good to meet you.
Nature is marvellous, I’m just hoping the scientists discover a natural cure for this frustrating condition out there somewhere.
I, too, keep a journal as it’s so helpful with checking dates and the ever-changing symptoms that medics need reminding of!
Take care and thank you again for your support xx

Thank you Jen, lovely to hear from you.
The invisible symptoms play havoc with your mental state don’t they? My skin feels like it’s sunburnt and it’s so sore to sit down (but my legs won’t support me for long). My neurologist has played with many meds to try to ease it, but nothing works. It changes from day to day too, with no pattern. It doesn’t matter whether I’ve been resting for days or had a busy time, this condition is totally random and does what it does when it wants!
It’s good to know there are understanding folk out there who completely understand.
I, too, love being out in the garden with nature - it’s my happy place. I’m lucky that my husband has just built a wooden decking with ramps to all parts of the garden, which offers me great freedom. Nature is a wonderful thing, and a great comfort.
Thank you for your words of support, and good luck with the scream therapy!!!:laughing:
Take care xx

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Thank you Winnie, and apologies for not replying sooner. As is the case with this condition, I tend to forget what I’ve done, and have just remembered I posted here!
It’s a complex disease, that affects everybody in different ways. It’s so good to know there is support out there.
I wish you well, stay strong for your family, but let them help you. I don’t know the age of your children, but I think it would help them if you shared the basics with them. I, too, feel guilty for needing help and putting extra responsibility on my family. They spend a lot of time trying to convince me that they love me and WANT to help.
Good luck with whatever you decide.
Thank you again for such a warm welcome.
Best wishes to you xx

Hi, I have retrieved a book by Professor George Jelinek from a cupboard this week. ‘Overcoming Multiple Sclerosis, an evidence-based guide to recovery’. He has MS himself (since 1999) as did his mother. I haven’t had the energy for the detailed read but his recommendation of lifestyle changes, including a plant-based diet is persuasive. As a flexitarian I haven’t gone the full vegan yet but this evening’s Tofu stir fry was in my mind when I read your wish for a natural cure (which I share) as this is my ‘one small step’. Thanks for responding, Steve.