Hi Everyone,
I have found these forums so useful, helpful and love the support that everyone gives each other. This is my first post as I have not had the courage to start posting anything as of yet, but I must admit I am really struggling with my symptoms and how to manage them when effectively we still don’t know what is wrong. I also feel terrible that I am moaning about my health when I know some of you have had these for a long time and are still in ‘Limboland’. I am 26, work full time in an office and have a daughter aged 6 and a son aged 3.
It all began on 10th March 2013 when I started to get a dull ache in my upper arm. It felt as if my arm were too heavy and started to become numb, the worst area being at my fingers. I found this impossible to ignore as I work in an office. Ignored it until 12th March 2013 when I finally went to my GP as it had now spread to my leg and I wasn’t able to walk properly. The GP booked me in straight away for an C-Spine MRI to see whether there was a trapped nerve. The symptoms got progessively worse along with extreme tiredness and not being able to walk. On 19th March 2013, I was nearly immobile, my legs felt numb constantly along with my right arm and it felt like my back was also starting to go numb. I was at worked and called my GP. She advised me to see her immediately and was concerned, so sent me to the Medical Team at the local hospital. They admitted me with a view to have an immediate MRI. Unfortunately they were unable to obtain an MRI and I was discharged with instructions to have an MRI head as they thought it could me MS. The symtoms have been on and off since about 27th April 2013 and I seem to have full mobility back with the occasional numbness in my right hand that comes and goes. Even as I write this my right hand is tingerling! The immobility I can cope with but the extreme tiredness feels so overwelming I find it a constant struggle. It is like no tiredness I have ever felt before, even when my son was a baby and he had a range of sleeping and feeding problems. I could understand if I had insomnia but I get around 8-9 hours of good sleep a night and yet still feel like this. I have had every blood test available to check my Iron levels, B12 levels and my Thyriod. Everything there is fine. I just keep being told that I need to wait till they have the results of the MRI head before anything can be advised with regards to treatment. This is all well and good but when you have this extreme tiredness, a full time mentally demanding job and two young children to take care of I feel like I am drowning under the pressure. My partner has to work long hours so doesn’t tend to be home till after 8pm most nights.
I have looked into non medical ways to improve fatigue and I know exercise would be the best option but I have a major time issue, I basically don’t have any and when I do I am too tired and have to be in bed at 8pm. I have looked into diet but there is so much conflicting evidence I am un sure where to start.
Sorry for ranting but I feel like I am in a constant blur trying to keep up with daily life and a potencial illness. My hair is also now falling out, which I would imagine is due to stress, which as you can imagine has been really upsetting.
My next MRI is on the 19th May with the review of this on 21st May. I just don’t feel like I can wait any longer and need some help. Does anyone have any advise as to what I can do, where I can go to get help and support etc. If anyone does I would be so grateful. Again I apologise for my ranting.
Hello, welcome, and well done for posting 
It probably doesn’t help a great deal, but I know exactly how you feel having been in a very similar situation years ago. My advice is simple: stop! You have experienced some sort of neurological attack that your body is trying to recover from. You need to give it the breathing space to do that and that’s not going to happen if you are working full-time and looking after two children and a home. I bet that your GP would give you a sick note and there is no job that is more important than our health and our family (and that includes housework!). I wouldn’t worry too much about exercise right now if I were you - it’s not normally a great idea to exercise when fatigue is really bad; better to wait till you are feeling more able and then start slowly. Exercise is often a great way of improving ongoing fatigue, but I seriously doubt it’s going to do any good for relapse fatigue. As far as diet goes, my advice would be to eat a healthy, balanced diet. Your body needs the right nutrients and that’s usually the best way to get them. Feeling like we’re drowning means it’s time to come up for air. Time to prioritise the truly important things. Karen x
Hi Karen,
Thank you so much for replying. It has made me feel so much better to know that I am not alone in all of this. I am sure that the doctor would probably give me a sick note but work is a complicated one. I work in a department and do the same job for three subsideries within one parent company in three countries and because even though it sounds like a big company, there is only me and my boss! Because there is no one to take the load if I were off I feel guilty that I would leave them with no help. Deep down I know that you are absolutely right but I hate letting people down and would feel terrible to down tools, and to be honest I would worry when I came back to 1. Chaos and 2. would it actually make a difference to the fatigue and would I then end up back at square one after a week or so off?
I then wonder would I be able to reduce my hours (in the short term at the very least) but being such a complicated job I wouldn’t have thought they would be happy to bring someone in to job share, and also apart of me doesn’t want to have to share my job!haha!
I’m so sorry that I am being so negitive, I am struggling with all of this and the dramatic change that it seems to be bringing with it, which I just don’t have time for! Typical woman!
Also there is the factor of money. We can not afford for me to be out of work and Statutory Sick pay wouldn’t come close to helping at all.
You are absolutely right Karen and I know that it is me that is probably making myself even worse because I am almost refusing to slow down. I just find it hard to approach my employee when technically I don’t have a diagnoses.
Do you know what avenues would be best to take to look into slowing down?
Alice
Just my opinion, but…
The first thing you need to do is accept that you have to make some changes (hopefully temporarily).
Then, if you really can’t go on sick leave, I think you need to have a serious think about how to reduce your workload, stress, fatigue triggers, etc. Could you work from home? Could you change your hours slightly to avoid long commutes? Could you get a temp in to do some of the more tedious, time consuming work? Could you go part-time for a while? Could you get a cleaner? Is there anyone who can help out with the kids? Could gran/grandpa/aunt/… move in temporarily to help out? Could your husband change his hours and/or be home earlier? Etc.
Then I think you need to tell your boss and you need to have a serious conversation with your husband about the fact that you aren’t coping and he needs to help more.
I really do understand how hard this kind of thing is, but it really is necessary. This kind of fatigue cannot be “pushed through” and trying to will not do you, your family or your boss any favours.
Hopefully this will be a one off event and you will get back to normal in the coming months, but not resting is more likely to make it last longer in my experience 
Kx
You are right I have looked into some options but legally with employment law I have advised that until I have a diagnoses my employer doesn’t have to agree to anything. Which is a massive blow but hay ho! Thank you go all you lovely advise today. It makes a huge difference and this is day 6 of my leg and arm being mobile which having use of them again after nearly two months is fab! Trying to stay positive! My MRI head is on the 19th May so hopefully something will show up and I might to a step closer to understanding what is going on with my body. Will be back to update soon! Alice
Hi, I just want to repeat karens advice of taking some sick leave. You cant go on as you are or you will burn out!
It is 14 years since I retired. i had a senior position, supervising others, ordering stock, balancing the books and was always very conscientious.
I went to see my practice nurse at the GP surgery, about something unrelated to my fatigue, daily falls and spasms/spasticity. She said I looked tired…it all came out.
My manager was less than supportive and i felt overwhelmed with it all. The nurse said You NEED some sick leave. Take a week and self certify.
I did that and the first week turned into 2, then a month, then 3 months. I never went back!
My symptoms were very PPMS like and i spent years seeing lots of neuros, having tests and worsening quite rapidly.
I had to be retired on ill health grounds. Not working was an alien thing to me. i felt I should carry on, as that was how I was brought up.
But when something as big as MS strikes, we have to go with it`s flow.
Work will survive without you…it has to.
Look after yourself, yeh?
luv Pollx
Hi Poll, Thank you for you lovely message. I know I need to stop and slow down but I have been working out the finances and we can’t afford for me to stop working conpletely. I got in touch with an employment solicitor to work out what my legal position was at work and I was told I have no legal rights to request anything from my employer! Not the best news but am hoping I will get a diagnoses of some kind within the next couple of weeks (optimistic I know). I think my biggest problem with limbo land is because I don’t have a diagnoses I can’t get any treatment, whether through medicine or just life style advise. So frustrating but am trying to stay positive. On the positive note day 10 of getting mobility back on my left side, but still shattered! Can’t have it all I suppose! Thanks again Alice
Hi again Alice.
I often read here how people can have no treament without a diagnosis.
But that wasnt my expereince. I was given meds to help my problems almost straightaway.
I also had the services of physio, podiatry, continence service, wheelchair services and OTs.
It was years before i got a diagnosis…which turned out to be wrong anyway!
I`m glad to hear you are improving.
luv Pollx
Hi Poll, I think I better go back to my GP then if they can offer some kind of treatment. I keep asking but all they kept saying was ‘we can’t start treatment for something when we don’t know what it is’. Strange thing is nearly all of my symptoms have gone except the occasional numbness in the arm and leg and the occasional bouts of fatigue. I have noticed that my vision is getting blurry when reading and have to really focus on the words. I’m going to get an eye test this week, probably just my age finally catching up on me but thought on the safe side. Just a shame I couldn’t get access to the services when I needed them. Never thought I would count down the days for an MRI but 10 days to ago! Haha! Thanks Alice x
yes i agree with some of the other replies
even if you don’t have a diagnosis, you DO have symptoms which your gp can and should help you with.
for example - bladder issues can be treated, neuropathic pain can be treated, referrals can be made to physiotherapy
there’s a lot your gp can do but it seems like you have to ask for it specifically
good luck
carole x