Where to start

[Adie]

Hi all,
Where to start sounds crazy asking i have always been active (cycling, footballer and weight trainer to name a few) but now when i lift my weights or ride my bike (for minutes and on a trainer) i am so fatigue cannot stand and find it easy to say i not doing that again,
I try and do what Dave says and stay active,
any advice/tips on this I'm all ears oh eyes ill be reading this.

[AMFADVENTURES]

Adie, I've been following you here and it does seem like you're having some significant problems which may or may not be MS related. I don't know how health care works in the UK but obviously your first step would be to rule out any potential health problems not related to the MS like heart issues, arterial restriction, hypertension, etc. Also, I've experienced symptoms similar to what you've described due to cetain medications. In one case severe faintness/weakness was caused by a medication for high blood pressure. In another case I found post exercise pain had been significantly increased by a medication for high collesteral. Both of these instances were verified by one or more physicians. In an unverified case, I suspect the fatigue and weakness post exercise was due to an active MS exacerbation.

I feel for you Adie, it's a bitch when you're really trying but just can't seem to make progress. Feel free to message me via the forum here if you like.

Larry

[Adie]

Larry thank you for your input. i am on no meds maybe Sativex (med cannabis) is coming my way, i have started do small amounts of exercise and stop before i get to pooped and trying to build up slowly.

[Suebee]

Adie, you are in the right place here for advice and support! Larry, Dave, and the rest have kept me trying.... I’ve found “fatigue” is a broad term and when one consults with medical team it is helpful to search for more specific descriptors to help medical team understand the issue and strategize ways to improve activity level. So for example, I explain I have “poor endurance” and then give specific examples, ie, I walk 6 min timed test and my pace slows halfway with foot stumbling and gait sloppy. I explain I get both muscle fatigue and mental fatigue, and give examples and timing of both. Another example, sitting driving fatigues my core and arms and requires a certain amount of down time for recovery. This concept that passive activity would fatigue my body is hard for laypeople to understand and drs need to be told exactly how muscle weakness is impacting your specific activity level. Dave has an awesome post from years ago about Kayaking with Laura and needing to lie down in the craft while still on the water because his core required him to. The story stuck with me and was really a watershed moment for me because I had never before heard of anyone with MS needing to take a lie down break in middle of an activity in the same way that happens to me! Your fatigue experience is shared. You are not alone.

I have not tried sativex. I suffer from muscle spasms and spacicity, which I think increases muscle fatigue. I understand the intense need to get relief from it. I hope it helps your symptoms. I use provigil, a stimulant, to keep me moving. I usually use 100 mg in morning. If I am working or it’s a big day, I take another 100 mg around noon. If I require continued focus and physical activity through the late afternoon (such as standing or work), I take another 100 mg, but only if it seems impossible to do without it. I give my dosing schedule here because neuros don’t give much guidance and I want to share what worked best for me after many years of experience and chatting with other MSers on line.

Also, consider a DMD. besides the slowing of progression and relapse rate, DMDs can make a big difference in improving energy levels. There are quite a few generous pharmaceutical pay assistance programs your neuro can fill you in about, if financial is a concern. Best wishes, Suebee

[Adie]

Thanks Suebee, liked the examples you gave regarding fatigue never really thought of the different ways fatigue comes on.
I'm PPMS so not a lot out there regarding meds just had a MRI and results ruled out Ocrevus which i was hopeful for because in the 8 years since my first MRI i have no new lesions.

[AMFADVENTURES]

I think you're on the right track there Adie, seems like you're kind of an old pro at this stuff anyway. I just mentioned that other stuff because a couple of good friends had severe cardiovascular problems last year that just sort of snuck up on them.

Good Luck

[Suebee]

Addie, I don’t know how much Covid has impacted your neuro’s DMD suggestions. It certainly put a wrench in anti-cd20 therapy commencement risk / benefit analysis. I do have faith in Ocrevus for delaying progression and cognitive decline in ppms and spms based on studies, but it’s B cell depletion is obviously a problem with Covid vaccines and need to be able to create antibodies. Perhaps there is a good alternative on horizon. I frequently check the drug and interventional clinical trials. ( I want Functional electric stimulation therapy! ) Here is link to search for ppms active recruiting or invitation only https://www.clinicaltrials.gov/ct2/results?term=Primary+progressive&cond=Multiple+Scl erosis&cntry=US&Search=Apply&recrs=b&recrs=a&recrs =f&age_v=&gndr=&type=&rslt=

And maybe seek 2nd opinion from another neuro, especially if your doctor is a generalist and not specializing in MS. Sometimes neuros have different viewpoints on how aggressive treatment should be. Also doctors need to know how risk adverse you are. I felt more strongly to take greater risks with my treatment when my children got older. Best of luck.

[cl3me]

Noticed you are in the UK, you might benefit from Dom Thorpe Fitness - he specializes in fitness programs for people with MS and other disabilities, is up to speed on fatigue in MS and how it affects exercise - I almost signed up with him over the winter but here in Canada the CDN dollar sucks vs. british pound and US dollar....


https://dt-training.co.uk/