good bad day

[mo1mo2]

Thought I was doing good. Went into town for an hour (my limit) Later washed hair . Today ache all over and can do nothing . Less and less activity seems to put fibro into over drive ?bad does this get

Maureen

[TheAuthor]

I am so sorry to read that and I genuinely hope that you feel better tomorrow.

All my hopes and dreams for you

Ken

[Hidden]

hi Maureen.thats about my limit too.took dogs out for what would be a 15 minute walk on my own but cos he is so slow and playing catch up ,was out for 45 minutes and could do nowt else back go to bed and sleep it off.i only manage going into town once a week and try to do everything I have to on that one time.have my every sympathy.

[clare_hart]

You might be interested in this excerpt of an article on ME/CFS, now renamed SEID:

The mysterious and complicated illness that has been called chronic fatigue syndrome has a new definition and a new name: systemic exertion intolerance disease, or SEID for short.

The name change is big news because many patients and experts in the field hate the name chronic fatigue syndrome; they feel that it trivializes the condition. Another name, myalgic encephalomyelitis, has been used in Canada, the United Kingdom and elsewhere, but it doesn't accurately describe the illness, either.

symptoms:

· Ongoing fatigue that is not better explained by a medical condition or insufficient sleep. Fatigue from exercise and other strenuous activities may last 24 hours or more.

· Difficulties with concentration, memory, or thinking.

· Enlarged lymph nodes, particularly in the neck or under your arms.

· Muscle pain that is not better explained by muscle strain or injury.

· Joint pain not caused by another medical condition.

· Chronic headaches or sore throats.

· Feeling unrefreshed and exhausted even after a good night's sleep.

- See more at: rcbm.net/behavioral-medicin...

Not all of these symptoms together are necessary to diagnose SEID, in my understanding from reading that is.

[fenbadger in reply to clare_hart]

Interesting stuff Clare.

[Chad_R in reply to clare_hart]

Hi Clare, mo1mo2, anbuma and fenbadger and mayrose- I had the same thoughts as Clare upon reading the posts. Glad Clare gave some info. There's more info here on HU on CFS/ME/SEID on the site: Ramsays Disease. Ramsay was an ME/CFS researcher. Ian and Crazy_Horse have mentioned the Ramsay's Disease site, which is just getting started. I see some members of Fibroaction are also members there. I have taken a look and suggest others also take a look if wanting more info.

[KT_Rose in reply to Chad_R]

Thank you. KT_Rose

[KT_Rose in reply to clare_hart]

It's an interesting topic. Thanks for the information, Clare. KT_Rose

[clare_hart in reply to KT_Rose]

I'm sorry not to have been around to reply. Been on the CFS list the past few days. NO energy to even look to see what was in the inbox. Hope you guys are well!

[KT_Rose in reply to clare_hart]

No need for any apology, Clare! None of us can be here constantly. We each offer what we can offer while we are here. You give a great deal here, Clare! Thank you so much! KT_Rose

[fenbadger]

I don't think there's an easy answer. And I'm sure the quality of activity makes a difference. Once I've done what I need to for the day I see how many spoons I have left after supper then try to do a bit of tai chi or something for the arms (my worst area). Then if I crash for the rest of the night it doesn't matter.

Sometimes there's just no space left for exercise/physiotherapy whatever you want to call it.

Good for you to go out and do what you can. There's no rewards for making yourself a wreck Hugs

[Hidden]

Interesting but as my concentration in poor at the moment i will study it more later.

One thing that did jump out at me was a contradiction regarding some thing that we discussed not long ago. How and when did fibro begin.

This is from the article.

`What is Fibromyalgia?

Fibromyalgia is a relatively new diagnosis, but has likely affected people for thousands of years`

Now can someone please explain to me how it can be both new and thousands of years old?

A very puzzled sue.

[Chad_R in reply to Hidden]

Hi Sue, Fibromyalgia used to be called "fibrositis," and probably had other names prior to the fibrositis name. Research and medicine move relatively slowly, especially for chronic conditions.

The term "fibromyalgia" may be a new diagnostic term, it's not a new condition

As for the co-occurrence of CFS/ME/SEID and FMS, Crazy_Horse had recently cited the studies which were published in approximately 1990, studies completed by A.L. Komaroff, Goldenberg and Geiger re: co-existence of both conditions in patients diagnosed by either condition. A quick search using the researchers' names and the two conditions yields a lot of info.

It all seems quite complicated.

[KT_Rose in reply to Chad_R]

Interesting information. It does get complicated.

Thank you, Chad. KT_Rose

[Micro]

I empathise, ....recognise wha is happening to you as similar to my past. we are individuals so it's hard to predict any future changes. Good luck !

[clare_hart]

Knowing the history of fibro, etc., is something I want to explore more. I will look up the info you gave Chad. I had heard of Ramsay's disease years ago whdn I was well, but being a respiratory therapist, not a nurse, it was never important to know about it.

[Crazy_Horse in reply to clare_hart]

Hi Clare, the reference to Ramsay's Disease can get confusing. An online search often yields: "Ramsay-Hunt syndrome," which is not the same condition.

"Melvin Ramsay was the recognized authority in ME from 1955 until his death in 1990."

More mentions of Dr. Ramsay here: hfme.org/wramsay.htm

You can find a Ramsays Disease forum here at HU. Many members are also members of this forum, as CFS/ME/SEID and FM often co-occur.

The link to the Ramsay Disease forum: healthunlocked.com/ramsaysd...

Hope you feel better soon, Clare.

Crazy_Horse

[clare_hart in reply to Crazy_Horse]

Thanks CH. More options to explore! Life is a never ending cycle. I love that about it.