I am having my first relapse since being diagnosed, things had improved but for the last 3 days i have had pins and needles in my upper body/arms/face and have had no appetite. I have been in bed or on the sofa all the time, I’m so tired and have no energy.
I am waiting for a call back from an MS nurse, the GP has advised me to go for blood tests.
I’m not sure if this is part of the relapse or something else - does anyone have any idea? i wondered if it could be fatigue, but it is lasting for days and i can’t do anything!
Fatigue is like that. A sneaky beast that fells you with no warning. And it can last a while. So together with your pins and needles, it does sound like it could be a relapse to me.
Does your GP suggest it’s something besides MS? I’m assuming that’s why you’ve been advised to have some bloods taken. Do you know what the tests are for? Obviously if your doctor suspects it’s something else apart from an MS relapse, then you should have the blood tests and listen to what the GP thinks is best.
Does your MS nurse normally get back to you quite quickly? Perhaps if s/he thinks it is a relapse, they’ll liaise with your GP to get you some steroids. If that’s what they recommend and you want.
Sue Thank you for your message, I did type a reply Wed night but it wouldn’t upload from my other phone for some reason. I read about fatigue on this site and it didn’t sound as bad as this but I’m still getting used to different symptoms and what they feel like. It’s nice to hear from someone else with the condition. I think GP just wanted routine bloods taken to rule anything else out. Going to chase ms nurse next week, be nice to chat to her even if it starts to ware off. Wasn’t sure if they could do anything for fatigue or if you just had to rest , assuming that’s what it is, Thanks Nicola
Fatigue is a much overlooked (in the non-MS world) symptom. It can literally wipe you out, so just getting out of bed and dressed makes you want to get back into bed.
There are a few things you can do for fatigue. Hopefully one of the things your GP has tested for is B12 level. Increasing your B12 is often a good idea (and while you’re at it Vitamin D is pretty essential for MSers). So if it’s not been checked, then maybe you could ask for that.
There are also two drugs you can be prescribed for fatigue, assuming all else is ruled out. The first and best is called Modafinil. Unfortunately it’s become difficult to get a prescription for it in recent years. But do ask your neurologist for it (I think you stand no chance of getting your GP to prescribe it). It stopped being prescribed because there was apparently some heart related side effect problems. But I took it for a number of years until it stopped working for me, with no ill effects. The second drug is Amantadine, this is less effective than Modafinil, but still helps, and it’s easier to have it prescribed.
There are other ways to battle fatigue. In fact battle is the wrong word, it’s really all about managing it. And that means working out what you need to to and doing little things at a time. And making sure you rest. Have a look at Fatigue | MS Trust for ways you can help yourself.
Sue, Thank you very much for all the information, it’s great to know the sorts of things I should be discussing with nurse/GP, I’m sure I’ll get to chat to nurse next week. I had a look at the link, it has some good info in, the tips on supplements are useful, I’m going to look into that even when I’m feeling better - hopefully will only be bad for week or two! Thanks, take care
I hope your feeling a bit better today. I know how it is with the fatigue or as I call it exhaustion I got up this morning and felt fine got washed and dressed then suddenly felt very drained, so had to sit down before I fell down. Rested until after lunch then went upstairs to sort out some catalogue clothes I had delivered yesterday, I only sorted them in to 3 piles to make trying them on easier, trousers in one jumpers in another etc, I was only up there 10minutes and suddenly exhausted again so no trying on yet! It’s so frustrating isn’t it? It does make you feel ill! Doesn’t it?
I don’t know about you but I’m always worse in the mornings especially in winter, it doesn’t make me sleepy though like some.
Im low in iron too at the moment and am currently on iron tablets, I seem to be low each winter, not sure if it’s just a coincidence. Could your iron be low too? That’s probably one of the things your doctor will test for together with your Thyroid level as both can have an impact in how you feel.
I have had ms for 6 years now, with a few symptoms but my worse is the fatigue and sometimes my balance isn’t 100% that’s what I feel like but it doesn’t show and I’ve also had vibration and and tingling etc. I take Nortriptyline for these which helps and also for nerve pain in one hand.
Are you on a DMD for your ms? Or do you not qualify? I’ve only just started and am five months in I’m taking Tecfidera a capsel twice each day, no side effects now. Make sure you list all your symptoms for your ms nurse as now if you have two or more new symptoms you may qualify.
As you can tell, fatigue is common and few people understand or sympathise with it. There is no cure or fix that works comprehensively. It has to be recognised then managed.
I’ve been dogged by it over the last ten days. I’ve brought myself back up to my usual slow self by pacing each day; yes I use a notebook, how desperate. I’ve also been dieting over the last eighteen months but I just cannot do it relentlessly every day.
A balance of food must be maintained. At one point I was in total despair but eating more nutritionally and getting as much sleep as possible has brought me round. I’m now back to my less than ideal self. To those who either mistrust or do not believe me I have gently asked them to look at the general symptoms on this web site.
Hi Ann I’m not on any treatment at the moment, I am struggling to speak to an ms nurse but want to make an appointment to see them rather than just speaking on the phone. Then I can chat through everything and discuss treatment options or lifestyle improvements. I am improving slowly in terms of what I can do, am littering round the house a little now, resting in between. Last week I was just in bed or on sofa hardly eating. My relapse started 10 Sep and I have no idea how long it might last, I’m just hoping all symptoms go away eventually for another few years. Going to ask the nurse about tests as I’m not sure what the GP got checked. Thank you x
Hi Steve, Glad to hear you are recovering from the worst of it. Once I get past this I am keen to learn about any diet or lifestyle changes I can make, even in terms of natural supplements too As you say, it will be about managing it, I think i’m relatively early on in my ms so not sure I’d welcome drugs yet unless advised. Best regards Nicola
I appreciate that it’s early days for you, but the information on the Barts Blog regarding treatment is well worth reading. This is just one of many posts on the benefit of early treatment.
Look at The Coimbra Protocol - Dr Coimbra is a Brazillian Neuro - who is having great success treating patients who have autoimmune diseases with high dose Vitamin D3 + other supplements. l learnt about it on facebook groups - Vitamin D Protocol North America. And - High dose Vitamin D Protocol Autoimmune Diseases. They are a lovely group of MS’ers and welcome all.
l got Ana Claudia Domene’s book from amazon - you can also download. ‘Multiple Sclerosis and lots of Vitamin D.’ My Eight-year treatment with TheCoimbra Protocol for Auto-immune diseases.
As you are fairly new to MS - all the better to start with this treatment. l have had MS 34yrs - but still hoping for improvement. Many of people on these facebook groups have tried all the dmd’s. And even HSCT - and are now trying The Coimbra Protocol we good results.
l can honestly say that l do not have brain fog or fatigue - but l cannot walk unaided. So hoping not to progress and perhaps get back some mobility. l take all the B vits - including B12/Thiamine/Riboflavin/ Biotin - Alpha-Lipoic acid / magnesium glycinate /magnesium L-threonate. Vitk2. Gluten free diet - l found eating gluten just zapped my energy.
Our NHS - as wonderful as it can be at times - is SO behind with treating ms. GP’s are quick to write out prescriptions for drugs that have serious side-effects - and then prescribe more to address the side-effects. l try to be as natural as possible.
