cfs or MS?

[livy444]

Hell everyone,

I was hoping someone could help me by describing what it feels like to have MS. I am confused as my diagnosis of CFS doesn't seem to fit as CFS patients experience muscle pain which I don't have.  I am a 32 year old female.

Throughout 2006, I found myself getting progressively fatigued over the course of a few months.  After moving flats, I woke up one morning to find I could barely move my arms and legs. they were like lead and standing up took so much effort.  I was incredibly weak.  I couldn't leave the house.  This went on for about 3 or 4 months and gradually I began to recover the strength to do normal things like cleaning and walking.  Accompanying symptoms were tingling all over my scalp and sharp pains in my scalp.  I had a constant feeling of distress.  The brain fog was unbearable and even watching tv was too much.  I had a constant tightness around my chest and felt as if I couldn't get a satisying breath. When I stood up I felt as if I would collapse. I remember one day i was determined to make dinner but even chopping the vegetables was too much and I ended up crying with frustration. My arms were too weak to hold the knife.

Two years later in 2008, the same thing happened again and since then (about 2.5 years ago)  I have had a battle to return to part time teaching.  I can now just about cope with working on four mornings a week but by the end of the day I can barely function and by the end of a week my body gives up on me.  Right now, I am in the middle of my third 'relpase'.  I have had remitting phases but I haven't had a good day (by my old standards) in those 6 years.  Currently, I am so weak most days it is such an effort to walk and climb stairs.  Brushing my hair or cleaning the kitchen surfaces is exhausting,  I just need to put my arms down to rest them every few seconds.  My legs are so heavy and wobbly.  I also have very heavy eyes and pain over my eyes and scalp - constantly and worse during the 'relapses'. I force myself to move but get more exhausted when I do things.

I have an underactive thyroid which is under control but otherwise blood tests have shown nothing is wrong with me.  I have seen a neurologist who tested my reflexes (a few months back) and they were fine.  He also said I had a clear MRI.  I had two mini 'relapses' between the ages of 17 and when I first relapsed severely in 2006.

Are CFS and MS alike in any way?  Did any of you get diagnosed with CFS before MS?  I am just so frustrated as my life is so limited but I love life so much and desperately want to find someone who can help. Does this sound like MS to any of you?  Lastly,  I am not worried, like many of you I have had so many years of feeling so unwell that I just want a correct diagnosis.  Thank you for reading this long post!

[anon07072023]

Hi Livy,

Volunteering would be good. Especially if you can afford financially to leave your job.

I take Amantadine for fatigue. It's not the greatest. I felt like a walking zombie before I started taking it. At least I don't feel like a zombie anymore.

I've heard of quite a few having very good success - people with MS and CFS - taking Provigil. But it's also difficult to have insurance approve it.

Take care,
Kelly

[livy444]

Hi Kelly,

Thanks so much for replying.  I have tried an anti-depressant but it made matters worse.  I have had all the usual treatments for cfs like cbt and the lightning process (neither of these had an impact) but my symptoms have all come back suddenly again.  I had thought I was doing ok and was back to work.  I am at the stage now where I will have to at least consider going on incapacity benefits but I love my job and will feel so useless.  Maybe I can do something voluntary to keep going.

I think it is CFS as I have no lesions but there are no drugs to help cfs.  What treatment do you take?  I have heard of something called low dose naltraxone used in MS and now in CFS abroad.  Do you take that or something else?  

Thank you for your opinion and the very best of luck yourself.  

Livy

[livy444]

Thanks for all your advice too Alex,

I did have mono when I was 14 so it is certainly possible but my temperature is normal I think.

I am so so determined to beat it but I keep getting knocked back. I do gentle yoga, have massages, eat very healthily ( saw a well known nutritionist) , try to exercise gently, think positively.  I use affirmations and the lightning process to try to think myself well. My legs and arms are just so weak I try to walk but they just don't seem to want to hold me up!   I'm blue i the face with it right now. I have had relapses since I was 17 and I am now 32 so it has been a long time of trying different things, none of which have even relieved symptoms.  The only thing that helps me is if I rest and sit it out.  This can take weeks or months then I usually improve a little bit but never get back to 'normal'

Wishing you well and thank you for your time.

Livy

[livy444]

Hi Kelly,

Thanks so much for replying.  I have tried an anti-depressant but it made matters worse.  I have had all the usual treatments for cfs like cbt and the lightning process (neither of these had an impact) but my symptoms have all come back suddenly again.  I had thought I was doing ok and was back to work.  I am at the stage now where I will have to at least consider going on incapacity benefits but I love my job and will feel so useless.  Maybe I can do something voluntary to keep going.

I think it is CFS as I have no lesions but there are no drugs to help cfs.  What treatment do you take?  I have heard of something called low dose naltraxone used in MS and now in CFS abroad.  Do you take that or something else?  

Thank you for your opinion and the very best of luck yourself.  

Livy

[anon07072023]

Hello and welcome to the forum.
I'm sorry that you're having so many troubles. I can certainly understand your frustration.
From my experience with multiple sclerosis and what I've read about CFS, your experience sounds more like CFS than MS to me. But, of course, I can't say for sure one way or the other.  Many of the symptoms cross-over one another between the two.

Have they been able to give you any sort of medications that help with the symptoms of fatigue and the weakness that you are having? I hope you find some relief soon.  

Best of luck to you,
Kelly  

[HVAC]

I am not a Doctor this is just speaking from experience.

MS clearly shows up on a basic Neurological exam. Reflexes etc. If you have Neurological damage it does not come and go. Neurologists can tell more about damage from a basic Neurological exam then even a MRI.

One theory of CFS is it could be Chronic Mononucleosis which can do all the things you describe. People run low grade fevers, may be up only a degree or two and feel pretty crummy. The virus can come and go or stay under the surface and when ever you are stressed rear its ugly head.

CFS is a mimic of MS because it has similar symptoms such as fatigue and brain fog and intolerance to heat since people often run a fever. It does not have a Neurological component that I know of like MS. The problem with CFS is there is not much a Doctor really can do especially if it caused by a virus.

I have had Mono and I got over it by getting a really good diet, no sodas lots of water or processed foods, lots of exercises, starting slowly at first ( walking, yoga, swimming), taking immune boosting supplements and vitamins, going to bed at the same time and getting up at the same time. Oh and learning to deal with stress I learned self hypnosis.

If you are still worried you can seek out more Specialists by all means. May be it is something else.

If you do have CFS it is real but it is with in your grasp to help yourself which is good. People get frustrated because we think Doctors should fix us but they can't fix viruses. They are not being dismissive. I did tons of research when I was sick with Mono and found my Doctor could not do anymore. I took it upon myself to all the things I described and I did get better but it took over a year.

I can't tell you which you have. I can if it is CFS it is not fun to have. You can't cure it but with hard work you can manage it. I hope you either find your answer or at least some healing.

Alex