Which 1 symptom would you have fixed?

I agree, the brain fog is a huge burden, especially as I have a job that requires a lot of thinking. Even outside of work it's an issue, on days like that I do as little as I can. Does anything help you?

I've not found anything to help with the cognitive side yet.  I take ginger, turmeric and black pepper to help with pain.  I was told it was fibromyalgia, but this was just an assumption because I had ME, not something that was tested to be correct. I pushed to get a rheumatology appointment and was found to have psoriatic enthesopathy.  Flaxseed and q10 help with. Blood pressure, which is always better after exercise, but it is difficult to keep th balance between adequate exercise and overdoing it.   This is particularly a problem as I get tired and then the brain ceases to function properly and I forget all about not doing too much, or recognising why I am not feeling good.  I try to eat things that are healthy, but have not found anything that really helps memory and thought processes.  I feel so stupid sometimes when I just get muddled about what people are saying or even what I am trying to say. 

Hi Helen - you got a strange sense of humour girl. I'm lucky to not have the incontenance (thanks, one to luck forward to).  I do get a mixture of part and complete paralysis.  Thankfully they don't last nearly as long as the fatigue and they haven't occured in public yet.  

They do say no sleep is a form of torture (thanks for the torturing on a nightly basis).

It's a hard one ... no pain but no energy to do anything, or pain but you've got the energy to fight through the pain?

I have some kind of muscle disease that has made me so weak I now need a walker to move.  I have other problems too.  But If I was not in so much pain I could enjoy what little life is left to me more.  I was TOLD I have CFS but I don't believe that is what I have.  I get tired, but it is nowhere near as bad as the weakness, the pain, or the brain fog.  From all I have read here I think that people who actually DO have DFS are going to say "exhaustion."

Sunny

Weakness and exhaustion are 2 different things and I now totally understand why the pain tops your personal wish list.  I do believe my CFS title (although prefer ME as the name).  Weakness is not particularly a symptom for me unless I'm too tired.  The pain and weakness is personally more under my Fibromyalgia title.  Some say it's the same thing but I don't agree.  ME/CFS needs me to rest, Fibromyalgia needs me to keep moving (I'm in that catch 22 situation).

I wish you luck in trying to diagnose what the doctors aren't.  I had to do it to get the Fibro title.

Thanks Julie.  I used to work a 40 hour week as a cook, on my feet all the time, lifting heavy loads all day long (even mayo comes in 30 lb tubs) and then hiking on my days off.  I started going downhill about 8 years ago and thought it was just middle age, but I got weaker and weaker.

One year I could lift a 50 lb bag, next year I couldn't,  ear after that I couldn't lift 40 lbs, then 30 lbs, then 20, then I had trouble with 10.  Now I can barely lift things in the 5 to 10 lb range, it takes both hands and all my concentration.

I get fatigued because I am using only the few muscles that still work to do the work that the other ones used to do. But it is not the kind of fatigue/exhaustion I am reading about here.  It is normal fatigue, not the kind of overwhelming exhaustion I used to feel when I got the flu.  From what I hear, that is what people with CFS have.

I am sitting at a bistro table right now with my forearms resting on the table while I type.  They are holding me up because without them I would fall over sideways.  I can no longer hold myself upright without a prop of some kind. 

I am looking to buy a wheelchair soon because the walker is just not enough to keep me upright in public.  It has a small seat and without it I could not go anywhere because I can't stand up for more than 5 min at a time.

I wish you well, and everyone else in this forum.  We may not have the same illness, but we face a lot of the same problems.

Good luck,

Sunny

Hi Sunny, from the bits I have learnt that doesn't sound like CFS. Our strength is still there on good days.  You sound like you've got a muscle wasting disease. Something that is eating away at your strength and you're not getting it back.  Definately one for google searching!

I wish you all the luck it stopping your deteriation and regaining the strength you once had. XX

Hi Julie,

Thanks for the kind words.  Yes, I was diagnosed with Inclusion Body Myositis, but then two years later a muscle biopsy did not show the expected damage.  The presence of inclusions in the cells is proof you have it, but the absence does not rule it out.  So I am going though more tests.  I suspect that what I really have is motor neuron disease.  One is a muscle disease and one is the nerves that control the muscles but they are really hard to tell apart. The BIG difference is that one takes 20 years to kill you and the other one is faster.

The reason they gave me the muscle biopsy is that my disease is progressing much faster than it does for IBM.  I will be having new torture tests (EMG) and a nerve biopsy soon.

I am also looking to buy a wheelchair because the walker is not enough support now.  It has a seat in it but it is small and uncomfortable. I have to sit down every couple of minutes to rest.  I think that sitting in the chair and pushing with my feet would actually be faster.

The first neurologist said I had IBM from my symptoms.  The second one said that I didn't from the absence of inclusions.  He also said that I had to have CFS because they had "ruled out" everything else.  Well, that is obviously ridiculous.  From everything I have read online and here on this forum, I do not have it.  The symptoms are completely different.

I suppose I should stop posting here but I find the problems to be similar, even if the cause is different.  We have "invisible" diseases, we "look fine" and it is hard for people to understand how hard it is to do anything when you feel like a limp dishrag.

Thanks for the good wishes, and I wish you all good luck too,

Sunny

Hi Sunny, for outside I would recommend a mobility scooter. My life outside is so much better for it.  However, they are extremely heavy to lift in and out of the car therefore you will need the lifting arm lifted to your car.  I have quite a bit of strength and struggle some days to get in and out.  If you are deterating quickly you might need to consider an electric wheelchair (how long do you thing pulling yourself by the legs might last).  Maybe you could hire a wheelchair for a few days and give it a test-run?

All the best with your tests. If it is what you think it is I hope for you it is the one that gives you a longer life.  Best wishes xx

Hi Julie,

I live by myself in a rented room, take the bus everywhere I go.  So basically I walk to the bus stop, then from the bus stop to the library or grocery store and then back again.  It is only about 1 - 2 blocks in any direction.  So it would be overkill to get an electric scooter, even if I could afford one.  I'm sure insurance would not cover it until I got quite a bit worse.  

By then I will be living in a nursing home anyway and I won't need to go anywhere.

Even if I could get one I am afraid that if I started using one I would lose the use of my legs completely. I can walk around inside okay, if slowly, but I have to sit down every couple of minutes to rest.  I'm like a battery that will not hold a charge.

I bought a wheelchair online yesterday.  For awhile I will just use it the same way I do the walker, push it from behind and sit when I tire.  But I will have an easier time sitting. Since my arms are getting weak faster than my legs I expect that I will eventually wind up sitting and leg pushing.

Thank you for caring and the best of luck to you.

Sunny

Hi Sunny,

I wish you all the very best in coping both mentally and physically sweetie. If you can't keep physically strong at times try to smile is my advice.

Keep physically safe and keep soldiering on it's the only way forward.

Don't forget to talk on this forum when you need to be heard.

Julie xx

Hi Julie,

I keep my spirits up by reading, playing games, and going on yahoo to make rude comments about people with the IQ of a turnip.  I have so much fun doing it that I put "Annoying People" on Facebook as my occupation.  LOL!

Keep smiling, they'll wonder what you're up to....

Sunny

Your turnip comment just made me make a veru unladylike snorty laugh. That's made my Monday morning this week  thank you.x