Who here has a Job?

[Jillo]

And if you have a job do you have any energy to have a social life at all?

I've been tired for the past 10 years but I've found a way to socialize a little and work a 40 hour a week job ( I was diagnosed about 13 years ago). Lately I'm exhausted all the time. I started Copaxone (40mg) on Monday this is my first time on an MS drug could this be why I'm so tired? Like more tired than I normally am? I had to call in sick on Tuesday because I couldn't get out of bed. I'm suppose to have another shot tonight will the same thing happen tomorrow? Will this fatigue get better over time? will I get used to it and still be able to work?
I've been on modafinil for about 5 years (started at 200mg a day, am now at 300mg a day) this used to help me but is increasingly not working over time.

I recently turned 40 and it was my husband that finally convinced me to get on a drug. My attacks are all foggy brain, balance and dizziness issues with a little ON thrown in for good measure.
My doc says "I can't help you get better if you have a big attack but I can help you prevent one"
My question is: Whats the point of being on a drug that makes it almost impossible to live my life when I could just live my life and deal with an attack when it comes if it comes. Why am I suffering to prevent something that might not even happen? I can't just work and sleep the rest of my life, that's no way to live. Right now it seems like my only choice is that or not work and have much less financially.
How does everyone else do it?

[jimmylegs]

no drugs personally, and i have worked up to 9 shifts per week since dx no problem. mind you i then blew out my knee which effectively put a stop to that particular pace for the last couple years
though i must say i was quite happy for any available anaesthesia drugs and post op pain killers when it came time for the reconstruction surgery lol
i work at home now. out of shape compared to three years ago. gotta get my butt in gear again! too used to relying on job for fitness.

[ElliotB]

Hi and welcome to TIMS.

You state "Lately I'm exhausted all the time." and that you just started Copaxone on Monday. Isn't it unlikely that the Copaxone is causing you to feel tired? From your description, I can come up with another reason for you being tired!

How does everyone else do it? I can't speak for others but I generally do not work (except at my health which I consider my 'full time job') and have less financially.

[Scott1]

Hi,

I can emphasize with your situation. From 1993-2014 I was able to work in a high pressure job but a very big attack ended that phase of my life. Now, I am very well and focused on improving my health. This is who I am so I am not making it up - http://www.mstranslate.com.au/ms-many-s ... ty-andrew/

Recently, the Cardiologist took me off blood pressure medication and now the spasticity clinic says they don't need to see me any more . It doesn't have to be all doom and gloom.

I have no opinion on Capoxone as I haven't used it but the 10 years I spent taking Avonex were the pits. That injection gave me a weekly dose of what you are talking about until I started making modifications. Now I do not take any blockbuster medication, have no fatigue, can do Pilates at a very high level and my brain is the clearest its ever been.
Rather than just bang on about what works for me, if you can share a bit more detail about your symptoms I'm sure people will make useful suggestions. Some won't apply to you but other ideas may be useful.
Maybe you can ask your doctor what evidence he has that he can prevent an MS attack as he obviously has information that no one else knows about.

Regards,

[lyndacarol]

I've been tired for the past 10 years but I've found a way to socialize a little and work a 40 hour a week job ( I was diagnosed about 13 years ago). Lately I'm exhausted all the time. I started Copaxone (40mg) on Monday this is my first time on an MS drug could this be why I'm so tired? Like more tired than I normally am? I had to call in sick on Tuesday because I couldn't get out of bed. I'm suppose to have another shot tonight will the same thing happen tomorrow? Will this fatigue get better over time? will I get used to it and still be able to work?
I've been on modafinil for about 5 years (started at 200mg a day, am now at 300mg a day) this used to help me but is increasingly not working over time.

I recently turned 40 and it was my husband that finally convinced me to get on a drug. My attacks are all foggy brain, balance and dizziness issues with a little ON thrown in for good measure.

Welcome to ThisIsMS, Jillo.

Fatigue is a common symptom of vitamin D deficiency. (Cognitive issues and even optic neuritis have been linked to vitamin D deficiency also.) Not all of your symptoms necessarily have the same cause.

If you have not had the vitamin D blood test called "25-hydroxy D," I encourage you to request it from your GP. (Also request your own copy of the test results so that you have the actual numbers.)

GrassrootsHealth (http://www.GrassrootsHealth.net) is offering their at-home finger-prick vitamin D test for only $49 during this month of March. (No doctor's order is required.) GrassrootsHealth recommends that the vitamin D level should be at least 40-60 ng/mL. In my opinion, it would be a good idea to learn if you are deficient in vitamin D.

[MSKarateka]

I am employed full-time and work overtime aggressively. I also have not disclosed my diagnosis to my employer. I do not intend to, until such time it impairs the safety of my co-workers.

I am a Security Officer in a hospital. I also go to school full-time for a double major, then plan to follow up with a Master's degree.

I realize I am not every case. I was just diagnosed less than a month ago and my symptoms have been leg numbness and loss of some coordination. I had a moment at the dojo during some of the conditioning exercise where I go light headed and wanted to puke. But, I am caulking that up to the steroid infusion as my numbness went to tingling.

[jimmylegs]

did you have an answer for OP's question, LC?

[lyndacarol]

did you have an answer for OP's question, LC?

No good answer; I am searching like everyone else here.

Who here has a job?

I do not have a job; I am retirement age.

How does everyone else do it?

I try to get through each day – eat a healthy diet (organic, grass fed beef, no dairy, no coffee, very little sugar), no smoking, no alcoholic beverages, take supplements that I think work for me, get adequate sleep.

[aetex]

I have a job- 40+ hrs/week in a high stress/mentally exhausting but rewarding position. At the end of the week, I am worthless for any activities (this has become the evening where I am left to cuddle on the couch with my dog and watch Hulu- which is OK with me!). I have been on copaxone for over 2 years. I have not had one flare since I started it and no new lesions on MRI.
One dose of Copaxone does not cause fatigue. MS causes fatigue.
There is some anecdotal evidence of L-aetyl carnitine helping with fatigue. My neurologist said he sees about 40% of people who try it see results and the rest don't. Another provider I see in the same office does not think it helps. I tried it and it made a huge difference for me. It might be worth trying for a few weeks. More than supplements, I saw a huge difference in fatigue when I removed personal stresses, let myself lean on my support system and renewed interest in old hobbies. Self help and affirmations go a long way.
Overall- don't give up on Copaxone just yet. It could be really good for you, but one dose is not a fair chance.
Best wishes

[MSKarateka]

Btw. I don't have a social life. I am just too busy.

[centenarian100]

Unfortunately, you can develop tolerance to modafinil over time, so it might just be that your fatigue appears worse due to drug tolerance.

Some of the natural treatments of fatigue include exercise, sunlight exposure, and a healthy diet. There is some evidence from Oregon Health Sciences University that low fat plant based diet may help for MS fatigue. See the source below.

If you are trapped in an office all day, you could consider getting a blue light like the one below to replicate sunlight exposure



You may also want to have some blood tests done to make sure you don't have hypothyroidism, B12 deficiency, anemia, or carnitine deficiency which can contribute to fatigue.

"Effects of a Low Fat Plant Based Diet in Multiple Sclerosis (MS): Results of a 1- Year Long Randomized Controlled (RC) Study (P6.152)” Vijayshree Yadav5, Gail Marracci7, Edward Kim5, Rebecca Spain6, Michelle Cameron1,5, Shannon Overs4, John McDougall3, Jesus Lovera2 and Dennis Bourdette5 Neurology April 8, 2014 vol. 82 no. 10 Supplement P6.152

[NHE]

"Effects of a Low Fat Plant Based Diet in Multiple Sclerosis (MS): Results of a 1- Year Long Randomized Controlled (RC) Study (P6.152)” Vijayshree Yadav5, Gail Marracci7, Edward Kim5, Rebecca Spain6, Michelle Cameron1,5, Shannon Overs4, John McDougall3, Jesus Lovera2 and Dennis Bourdette5 Neurology April 8, 2014 vol. 82 no. 10 Supplement P6.152

This looks like a related publication...

Low-fat, plant-based diet in multiple sclerosis: A randomized controlled trial.
Mult Scler Relat Disord. 2016 Sep;9:80-90.

• BACKGROUND: The role that dietary interventions can play in multiple sclerosis (MS) management is of huge interest amongst patients and researchers but data evaluating this is limited. Possible effects of a very-low-fat, plant-based dietary intervention on MS related progression and disease activity as measured by brain imaging and MS related symptoms have not been evaluated in a randomized-controlled trial. Despite use of disease modifying therapies (DMT), poor quality of life (QOL) in MS patients can be a significant problem with fatigue being one of the common disabling symptoms. Effective treatment options for fatigue remain limited. Emerging evidence suggests diet and vascular risk factors including obesity and hyperlipidemia may influence MS disease progression and improve QOL.
  
  OBJECTIVES: To evaluate adherence, safety and effects of a very-low-fat, plant-based diet (Diet) on brain MRI, clinical [MS relapses and disability, body mass index (BMI)] and metabolic (blood lipids and insulin) outcomes, QOL [Short Form-36 (SF-36)], and fatigue [Fatigue Severity Scale (FSS) and Modified Fatigue Impact Scale (MFIS)], in relapsing-remitting MS (RRMS).
  
  METHODS: This was a randomized-controlled, assessor-blinded, one-year long study with 61 participants assigned to either Diet (N=32) or wait-listed (Control, N=29) group.
  
  RESULTS: The mean age (years) [Control-40.9±8.48; Diet-40.8±8.86] and the mean disease duration (years) [Control -5.3±3.86; Diet-5.33±3.63] were comparable between the two groups. There was a slight difference between the two study groups in the baseline mean expanded disability status scale (EDSS) score [Control-2.22±0.90; Diet-2.72±1.05]. Eight subjects withdrew (Diet, N=6; Control, N=2). Adherence to the study diet based on monthly Food Frequency Questionnaire (FFQ) was excellent with the diet group showing significant difference in the total fat caloric intake compared to the control group [total fat intake/total calories averaged ~15% (Diet) versus ~40% (Control)]. The two groups showed no differences in brain MRI outcomes, number of MS relapses or disability at 12 months. The diet group showed improvements at six months in low-density lipoprotein cholesterol (Δ=-11.99mg/dL; p=0.031), total cholesterol (Δ=-13.18mg/dL; p=0.027) and insulin (Δ=-2.82mg/dL; p=0.0067), mean monthly reductions in BMI (Rate=-1.125kg/m2 per month; p<0.001) and fatigue [FSS (Rate=-0.0639 points/month; p=0.0010); MFIS (Rate=-0.233 points/month; p=0.0011)] during the 12-month period.
  
  CONCLUSIONS: While a very-low fat, plant-based diet was well adhered to and tolerated, it resulted in no significant improvement on brain MRI, relapse rate or disability as assessed by EDSS scores in subjects with RRMS over one year. The diet group however showed significant improvements in measures of fatigue, BMI and metabolic biomarkers. The study was powered to detect only very large effects on MRI activity so smaller but clinically meaningful effects cannot be excluded. The diet intervention resulted in a beneficial effect on the self-reported outcome of fatigue but these results should be interpreted cautiously as a wait-list control group may not completely control for a placebo effect and there was a baseline imbalance on fatigue scores between the groups. If maintained, the improved lipid profile and BMI could yield long-term vascular health benefits. Longer studies with larger sample sizes are needed to better understand the long-term health benefits of this diet.

Free full text.

[Punchy]

I work 40+ hours per week, a long commute, have a young child who's in soccer, swimming, Tae Kwon Do. Dx 10 years ago and I am 37. It's hard, and yes I am tired all the time. I'm waiting for the bus home right now and I can barely stay on my feet. I want to beg off of my kids soccer game tonight but don't want to disappoint him.

I don't know if it's MS, or if 'normal' people feel this way. My husband sure naps a lot. ;)

I started Tecfidera 2 months ago after being medication free for 9 years. The beginning was rough, I felt.like garbage and really chafed at the whole situation. Things are slowly improving.

It could be the copaxone, it could be your busy life, it could be MS fatigue, or it could be something else, like your diet, thyroid, a cold virus, or being 40.

That's the fun part of MS - never knowing exactly what you're dealing with. At the end of the day, whatever the cause, it comes down to healthful food, hydration, sleep, exercise.

[ElliotB]

Just curious... why did you start a DMD after 9 years?

[Zyklon]

I am 33 years old, 40+ hours a week job. I was diagnosed with MS almost 3 months ago. I started Rebif 15-20 days after it. I fight with fatigue after being on full dose. I try to push myself and ignore my body. I did great progress with walking. Increased my walking distances day by day. My body tries to trick me but I let my mind make the decision. Side effect fever is my fatigue problem. After 37.4 Celcius my fatigue becomes greater. I spray my head with water or take a shower and lower my core temp. Ignoring my fatigue and pushing myself works for me. Once I start moving fatigue goes away. It is all in my head. A step counter is a great way to become more mobile. I use a mobile phone application. 5000-6000 steps daily and sometimes I do 10000+. As long as I push myself, I feel like I win.

I try to be social as much as I can. I am much better with it now. When I have fatigue, I don't like being home because I can't easily ignore it.

Drinking filtered coffee or Turkish coffee works for me but caffeine may make your symptoms worse.

My vitamin/mineral levels were terrible. D3 and B12 helped me alot with fatigue. Please consider having some blood tests.

Why I use a DMD? It may work for me or not and side effects may be huge but some people have success with DMDs and beat the side effects in months. I accepted the fact that my first months would be tough but possible long term benefits sounded good. Less relapses with less severity. DMD is a perfectly acceptable risk for me. If I experience major side effects with my current DMD Rebif, I will try another DMD as long as possible side effects are acceptable. I go after anything that makes me feel better and stronger. DMD is one of those things. Some others are diet, supplements, exercise, faith, someone motivating me around.