Difference between fibro and ME?

[smartcarkaz]

Does anyone know what the main difference is between the two. My exhaustion just lately has been scaring me, its not so much I need to sleep (any more than normal) but I don't have energy to lift things, even my own limbs at times. Also suffering dizziness. I'm quite frightened, feeling very alone. The wife is not supportive at the moment, she just feels shes getting the brunt of it all which I guess she is but I really can't try any more than I am.

[jellynpain]

Hi,

I've been diagnosed with both, first with ME, a couple of years after, also FM.

All I can say from my point of view is the Fibro is defined as pain by dr (and what came sometime after the CFS/ME).

It's all tough to live with, for me the poor mobility is the worst, feeling dreadfully unwell and constant lymph nodes problems (amongst all the other stuff). My partner is fab, but it does takes it's toll and we have the 'rare but there' spats. Usually when I'm struggling with on going life retrictions and so is my partner. It effects all 😢.

Wishing you well xx

[TheAuthor]

As far as I am aware (I could be wrong) but Fibro is a pain syndrome whereby the brain send signals to the body saying pain. ME is different in that it makes you tired, weak and feel exhausted but there is no pain element included.

I am sorry but I am not aware of the ratio of Fibro sufferers also having ME as well but I can imagine that the percentage is high?

Take care

Ken

[jaks in reply to TheAuthor]

I have me/cfs + fibro, pain is most definatly part of me/cfs

[smartcarkaz in reply to TheAuthor]

Thanks Ken, I think it's just a massive flare up but off to see a dr this evening. x

[Crazy_Horse]

It's possible to qualify for both FM and CFS/ME, now known as SEID in the U.S.

I have seen pain in either/both conditions.

I am sorry you don't feel supported when feeling so ill.

We are here and we are listening to you.

Crazy_Horse

[smartcarkaz in reply to Crazy_Horse]

Thank you for your support, I feel slightly less alone knowing I have everyone on here. I also have a friend who suffers from both but she's just spent 2 weeks in Florida so when she's better I'll be able to catch up with her, and she's always supportive, no matter what xx

[Ian123]

ME - Myalgic Encephalomyelitis

Symptoms may include persistent exhaustion (‘fatigue’), muscle and/or joint pain, sleep disturbance, ’flu-like symptoms such as headache, sore throat, painful lymph nodes, dizziness and/or nausea and problems with memory and concentration.

M.E. affects people in different ways and to differing degrees. It’s a very variable

illness and your symptoms can change over time.

Range of symptoms

Feeling extremely tired or exhausted most, or all of the time, is one of the main

symptoms of M.E. This feels very different from ordinary tiredness.

Simple physical or mental activities, or combinations of activities, can leave you feeling shattered or struggling to function. You can also experience an increase in other symptoms (see below).You may feel the impact straightaway but it can typically take a day or two to kick in. This is a key feature of the way M.E. affects people, and is known as post-exertional malaise. It is not significantly improved by resting.

Always get new symptoms checked by your doctor, as they may be unrelated to M.E.

Common problems

Persistent exhaustion or 'fatigue' - see above

Feeling generally unwell

Having flu-like symptoms (often called “general malaise” by doctors).

Recurrent sore throat

With or without swollen glands.

Pain

aching muscles or joints

nerve pains or pins and needles

headache or migraine

twitching muscles or cramps

abdominal pain (stomach or bowel problems)

chest pain

back pain

If pain, especially muscle pain, is more of a problem than fatigue, Fibromyalgia may be an issue an estimated 40% of ME also have Fibromyalgia with an overlap in symptoms .

Sleep disturbance

unrefreshing sleep

difficulty getting off to sleep

waking for long periods in the early hours

light, dreamy, restless sleep

sleep reversal (for example sleeping from 4am till midday)

hypersomnia (sleeping for a long time)

Problems with concentration, thinking and memory (“brain fog”)

reduced attention span

short-term memory problems

word-finding difficulties

inability to plan or organise thoughts

loss of concentration

Mood

frustration

anxiety

panic attacks

low mood, depression

mood swings and irritability

Problems with the nervous system

poor temperature control

dizziness on standing or sitting up

hyper-sensitivity to light and sound

sweating

loss of balance

poor circulation

Digestive problems (which can also be Irritable Bowel Syndrome)

nausea

loss of appetite

indigestion

excessive wind/bloating

cramps

alternating diarrhoea and constipation

Intolerance and increased sensitivity, eg:

bright lights

noise

odours

some foods (for example dairy or wheat)

some medications

alcohol

other substances.

NB. Women often find that symptoms worsen at different times in their menstrual cycle

[clare_hart in reply to Ian123]

Good Lord . . .

I just thought that was fibromyalgia!

But seriously, if flu like sx are experienced, do they need to be persistent or occasional? In other words, if I'm not being clear, can you have a lot of these but not experience them all the time?

Do you have any idea what percentage of the above immense list a person must have to point at ME? (or SPEID as Crazy_Horse said)

What kind of doctor would make this diagnosis?

[Crazy_Horse in reply to clare_hart]

Please see this link for Institute of Medicine reports/links on CFS/ME aka SEID:

iom.edu/Reports/2015/ME-CFS...

[clare_hart in reply to Crazy_Horse]

Thanks CH, I'll check it out. Just curious. I don't think my list of sx are extensive enough to fit anything more than fibro maybe with CFS, but always good to have more info.

[Ian123 in reply to clare_hart]

Only around 25% have the symptoms severely for the majority of the time that leave them bedbound, for the others the post exertional malaise is unique to this illness with the unrefreshing rest. Quite an overlap with Fibromyalgia symptoms so it can be complicated with both together, though the IOM report has set out clearly what it considers necessary for diagnosis.

[clare_hart in reply to Ian123]

Thanks Ian, I organized all of these ina Word document. I will bring them to my GP so he can get an overall idea that his own notes may lack. Then he might know what kind of referral to make, assuming he can't make heads or tails out of it himself! (which I do think would be the case . . . )

[Ian123 in reply to clare_hart]

Good plan cover all bases for best use of GP time

[mistee7 in reply to Crazy_Horse]

Hi, I'm glad you done a run down of me. Most people think it's cfs and nothing else. The list you provided, I have everyone of those symptoms plus more. I also have Fybromyalgia and what comes with that. Diabetes psoriasis ect... My hips are so bad now, I am in a wheelchair, I am 5ft 7 and weight 13 stone. Size UK 14 so it's not a weight issue . I really advice people to read the humming foundation. That explains so much.

[Lizzie57]

Wow when you see all the symptoms together, it's no wonder that most of us with this condition get depressed, me personally I have most of these symtoms and find it so hard explaining it to ppl so I will print this out and highlight the ones that mainly apply to me. Thanks Ian123

Gc ( granniecrochet) Lizzie

[Ian123 in reply to Lizzie57]

I would not want to frighten the newly diagnosed but I think a clear understanding of what problems are likely is useful. As we are all different the number and severity of symptoms will be individual and fluctuate, often without warning, something that is difficult for others to understand.

Happy if I have helped even a little

[Crazy_Horse in reply to Ian123]

Ian, you always help A LOT!

Thank you!

Crazy_Horse

[clare_hart in reply to Crazy_Horse]

Ian, my own GP is ignorant (not meant in a demeaning sense) of most of these types of illnesses, even wouldn't diagnose me with fibro, but he did send me to a pain specialist. What kind of MD would I go to for more information/diagnoses?

Saturday I just did 4 loads of laundry plus folded some linens from washing the day before. I was tired afterwards, but it was Sunday afternoon when I felt it. I was at a noon meeting and started to have migraine like symptoms. I had trembling hands all day but that is not unusual. I came home and slept 4 hours then ~10 that night. Last night I slept 10 hours then woke up too sore to get up - all my limbs too heavy so I slept off and on for another hour before I could get up.

I'm afraid my GP thinks I'm a hypochondriac - to some degree. I really want to ask him for a referral to someone more knowledgeable, but if I don't suggest what kind of specialist, who knows what he'll do.

[Ian123 in reply to clare_hart]

In the IOM report Ellen Wright Clayton said every physician should be able to diagnose the condition that had just been renamed SEID, no longer a need for specialists or expensive tests a simplified diagnostic criteria.

iom.edu/~/media/Files/Repor...

[clare_hart in reply to Lizzie57]

EggZACTly Granniescrochet!

[Boronia]

I have been diagnosed with M.E and Fibromyalgia and it is very difficult to know which symptoms are from which. Some Doctors believe the two are intricately linked.

Another symptom of both is variability....days where you can do more than others ( I call them "good" days but they don't compare at all to my pre illness life!).

It is worth noting that the more you can rest early on in M.E the better the prognosis a easier said than done I know. It is very easy to find yourself in a push and crash cycle where you do too much ( a relative term) then can do very little. Pacing yourself is recommended in all the advice that I have read.

Maybe it is worth you and your wife reading up a bit about ME..,..you could try hfme.org is good. Also there are some good Facebook groups do partners eg fibropartners.

It can be confusing and scary at first and you may suffer feelingsof guilt and frustration for not being able to do what you could before.

Wishing you well

[smartcarkaz]

Thanks for all your support guys, I'm going to the drs at 7:15 tonight for a 15 minute appointment slot. The Dr I spoke to on the phone says it sounds like fibromyalgia so I'm guessing this is just my worst flare up yet. She said we need to get the medication sorted to get it under control, and agreed with me when I said we need prevention rather than cure of the symptoms. It's hard because I work 30 hours a week over 5 days, 25 minutes into my week and I'm flagging already . I also woke up having an anxiety attack. Still, I'm determined to not let this beat me. It may have ruined my marriage, but it won't ruin me!!!!

I wish you all a wonderful pain free day.

Karen x

[bluejeans16]

Hi smartcarkaz.It sounds to me like you have ME and not fibro. I have had ME for over a year now and I always feel exhausted,I wake up in the morning feeling like I haven't even been to bed. Quite often I could almost fall asleep when I am standing up. As for the pain in your limbs if I feel really tired and have been doing too much my arms and legs really hurt. sometimes I can't even lift my arms up! I find that pacing myself has really helped but it was hard to get my head around at first. All I can see is take thing as easy as possible and don't push yourself too hard it really does help!

[smartcarkaz in reply to bluejeans16]

I feel like my list of symptoms fits more with ME than fibro, but then all my symptoms fall into fibro too. It's so confusing, I'm going to talk to the dr about it later and suggest it. I'm so afraid but I need answers. It's been 3 years since my original diagnosis.

Wishing you well x

[Crazy_Horse in reply to smartcarkaz]

It's very confusing.

Many medical professionals are confused about these issues as well.

Some find it so confusing, they'd rather not deal with either or both conditions.

The U.S. IOM made free downloads of info. available.

This includes a diagnostic algorithm for doctors to use when diagnosing people. The IOM had stressed the point that people can download this document and take it to their doctor to help the doctor to discern if CFS/ME aka SEID is involved.

The downloads can be found here:

iom.edu/Reports/2015/ME-CFS...

I wish healing for ALL.

Crazy_Horse

[clare_hart in reply to Crazy_Horse]

Yes, thanks. I read this article. Very informative and is one of two articles (among others) that talk of the relationships of FMS to other conditions.

[bonsabrost]

Wow - this list of symptoms is so recognisable. It makes me wonder if I have ME aswell as FM. I have an appointment with the Dr this week as my symptoms have been quite bad these past few weeks and although they have calmed they haven't gone away this time. I am still shattered and feel like I have flu (although I know it's not flu). This worries me

[smartcarkaz in reply to bonsabrost]

We're both in the same boat it seems, good luck with your drs appointment x

[Crazy_Horse]

Very helpful exchanges on this thread!

Thanks, everyone!

Let's continue talking/sharing.

Important topic.

Crazy_Horse

[Fibroman]

Some Doctors think Fibro and ME are the same. You experience pain with both and also fatigue. I was diagnosed with ME first then after doing research myself I approached my Doctor saying I thought I had Fibromyalgia and he simply said they are the same. This is just my personal opinion and experience with my own Doctor, I am sure other Doctors with have different opinions.

Fibroman.

PS. Personaly I found telling people I had ME harder to explain than if i said I had Fibromyalgia.

[smartcarkaz in reply to Fibroman]

Thank you, I feel as if they are very similar too and I display different levels of fatigue and/or pain at different times x

[bonsabrost in reply to smartcarkaz]

I know that feeling. The weekend was ok and if I kept busy I didn't feeling the aches and pains but as soon as I slowed down I felt every bone and muscle in my body hurting. If I keep going for too long then the pain becomes unbareable and a big flare up occurs. It's so hard to know what/how/when to do things/stops.

[smartcarkaz]

Everyone is being so supportive on here, it really means a lot to me and the rest of the Fibro community too.

Thanks guys

xx

[KLR22]

Fibromylgia sufferers have tender spots around the body (so I understand). Pain can be a big part of M.E. Sleep problems are common in Fibromylgia; with M.E, even though you're exhausted, you may have trouble sleeping (wired but tired). There are so many symptoms which overlap. I think it is ideal to rest and pace yourself as much as possible in the early months as that gives you the best chance of getting over it. Some people seem to recover within 2 years quite naturally.

Karen

[clare_hart]

Here are some other websites to check out. These give new definition to the condition referred to as ME/CFS. This first is called SEID, Systemic Exertion Intolerance Disease.

medicalxpress.com/news/2015...

npr.org/blogs/health/2015/0...

This other describes the relationship of Fibromyalgia, FMS, and Small Fiber (Nerve) Polyneuropathy, SFPN.

painresearchforum.org/news/...

It's a bit confusing but each discusses a syndrome which may describe FMS more clearly. Either one could apply to one fibromyalgia syndrome or another. Maybe both. Research is ongoing. I thought these articles and others were interesting and enlightening.

[Crazy_Horse]

The question of the relationship between CFS/ME aka SPEID and FMS has been an ongoing question for quite sometime now. AL Komaroff and Goldenberg were asking this question in 1987, 1990.

Simply google: Komaroff Goldenberg (you might add Geiger to the names if it helps)

I just did this and yielded so many medical journal, and other references, I could not possibly put them all here.

AL Komaroff is highly respected physician/researcher, located in Boston, MA., USA.

He is a known expert in CFS/ME/SPEID. He has also served as Editor-in-Chief of all Harvard Medical Publications. He has retired from Internal Medicine Practice and from the editorial positions in Jan. 2015 and now works with Harvard Medical School and has a website: askdrk.com.

Goldenberg specialized in FMS research. He was also in the Boston area.

Since they were both in the Boston area, they had decided to do a collaborative study on CFS and FMS patients. They each had patients diagnosed as CFS or FMS. They then did this study, where they both saw, examined together, each other's patients.

During that study, some patients were then given formal diagnoses of both CFS and FMS.

Hope this info helps in some way.

Crazy_Horse

[trekster22]

You can have both but ME i feel is more fatigue and weakness, fibro is more pressure points and pain.