Fibro and ME?

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Fibro and ME?

Postby Gingermama » Wed Feb 11, 2015 3:21 am

Hi

I've noticed a lot of people have said they have both FIbro and ME. I was wondering how you got diagnosed with both?

I have fibro and other related illnesses (IBS being the one keeping me awake till this time of the night) but in a lot of ways it's actually the fatigue that causes me the most problems.

I can just about deal with the aches and pain most of the time but when all the energy drains out of me to the point that the lack of energy hurts my whole body ( a different type of pain to the general pain) I just can't function and I get so cold it hurts. My GP is great but I'm just wondering if there is certain criteria for getting the ME diagnosis alongside fibro or if this fatigue I get is simple fibro fatigue.

I get this most often just after a difficult school run or when my youngest has played me up, made me carry him or pick him up when he is refusing to move no matter what I bribe or punish him with! Little monkey. (Usually I get both the boys to cycle to and from school but today I didn't have time for them to get their bikes out so my little darling played me up badly.)

I hope this makes sense, never at my best at 2am!
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Re: Fibro and ME?

Postby ixel-chick » Wed Feb 11, 2015 4:29 am

Gingermama wrote:it's actually the fatigue that causes me the most problems.

No ME here... but was wondering if you take something for the fatigue?

Both tablets I've tried did wonders for the fatigue! Like you, I looked at the fatigue as the worst... if I could only get a smidgeon of energy, surely I could cope with everything else a little better. :-D


With the first tabs (sertraline), I did however notice the pain more when the fatigue was gone. I expected to be able to deal with the pain better, but instead it made me more aware of it. :lol: I guess if the body is so much less knackered, the brain notices what else is playing up more.

That said, I'd rather have the pain than the fatigue, atleast with the pain the body is still functional, albeit painful. :-D Luckily my second tabs took away both the pain and fatigue.

Hope your tum settles for the night!
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Re: Fibro and ME?

Postby dazzleship » Wed Feb 11, 2015 8:51 am

I too find that the fatigue is worse than the pain, at least most of the time. I can't function if I can barely move my body, whereas even though the pain is bad I can still carry on.

(Unless of course the excruciating joint pain hits me :( , that is far far worse than the fatigue).

But in answer to the OP.. I'm not sure how one is differentiated from the other. I think I read somewhere that if you have more pain than fatigue it's likely to be Fibro, whereas if it's the other way around it's likely to be ME? So I guess with both it means you have a lot of pain and a lot of fatigue?

But I don't know for sure though.
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Re: Fibro and ME?

Postby FluppyPuffy » Wed Feb 11, 2015 1:23 pm

Altho CFS/ME is often regarded as one and the same by a good number of healthcare professionals, there are some who regard them as 2 separate issues and treat them in this way too. Whilst there are thought to be a number of similarities between the 2, there are also thought to be a significant number of differences between them too, as explained in this CFS & ME Comparison Chart.

For me, based on my history, test results etc the CFS description is the more applicable one, and is what I have on my records. And all the people involved in my care refer to it as CFS rather than CFS/ME.

What led to the dx for me was a significant change in the levels of fatigue I was experiencing. There were also a number of other problems arising, which were due to diabetes, which my GP said could also be responsible for the increased fatigue. As my BG levels started to behave themselves more suitably, other symptoms also started to settle, apart from the fatigue.....that just kept increasing. Around 6 months after the diabetes dx, after another round of tests etc ruling out all other possibilities, I was given the CFS card to add to my collection.

If you think you may have CFS/ME in addition to FM, go and see your GP armed with details of how you believe your various symptoms could be related to CFS/ME. Use comparisons with info from irrefutable sources and then see what is said.

The fatigue is for me the worst problem by far. From issues I have experienced previously, incl the problems that come with a broken neck, I'm pretty sure that if I were able to recharge properly and fully, I would find all the FM crud that gets thrown at me far, far, far easier to live with.
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Re: Fibro and ME?

Postby Theresa34 » Wed Feb 11, 2015 9:26 pm

I was wondering that just this evening. I have the diagnosis as chronic fatigue syndrome. No mention of m/e. I have wondered about ME as my symptoms came on after the flu which I had twice in the space of 2 weeks then never really recovered. From what I've read, that's how you differentiate from ME and CFS. My rheumy knows my history too.
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Re: Fibro and ME?

Postby Queenie_70 » Thu Feb 12, 2015 11:36 am

I was supposed to be tested for ME/CFS and even had an appointment, but due to my move had to cancel. I still need to talk to my new doctors about getting a new referral, but I figure I will hit them with one crisis at a time, and right now it is pain that I see them for. I was being referred because I was developing MS symptoms, but my doc kept brushing it off, and put in this referral instead. Not sure I know a lot about it, but a friend who is a nurse said it is Neuro linked and hoped I did not get diagnosed.....I guess it isn't nice, just from that comment alone.

Fibro and CFS, though, are often hand-in-hand diagnoses as chronic fatigue can cause Fibro type symptoms, and Fibro leads to chronic fatigue due to pain and other issues. Rock and hard place really....

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Re: Fibro and ME?

Postby Zia2014 » Sun Feb 15, 2015 3:12 pm

My first real fibro symptoms were agonising pain all over and an inability to walk...so understandably my pain was my foremost symptom and I was investigated on that basis. The CFS clinic turned me down because of that, saying it wasn't CFS.

However, the sheer exhaustion, either after a night of sleep or not, affects me more ultimately. I find I cancel everything, can't drive (too dangerous) and can barely think or function. At least with pain I can carry on, regardless of what effect it has on me.

I think (very much my opinion) the two are pretty interchangeable and it depends on the health provision in your area/your GP as to what diagnosis you can get. There are also meant to be differences in terms of whether you feel better after exercise or not.

Btw, I read a small article in a newspaper (the guardian?) a while back, which says typically ME lasts on average for four months! FOUR MONTHS!!! I can't comment as I (apparently) don't have it, but if I did I would be outraged at that.
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Re: Fibro and ME?

Postby Zia2014 » Sun Feb 15, 2015 3:13 pm

Theresa34 wrote:I have wondered about ME as my symptoms came on after the flu which I had twice in the space of 2 weeks then never really recovered..


Oh yeah, ME is meant to be 'post viral' whereas with Fibro there is some debate as to whether it is caused by trauma (mental or physical). Most doctors I've met think it is, but nothing caused mine and no one will convince me otherwise.
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Re: Fibro and ME?

Postby Gingermama » Mon Feb 16, 2015 12:20 am

Thanks for your responses, I think the whole FIbro and CFS thing is still just a complete mystery to healthcare professionals. For me, as I said I have had chronic pain for about 4 years, but it's when the fatigue hits hard that I find most debilitating. When it's bad all I can do is sleep. Easier said than done with 2 kids! I feel like I'm sleeping my life away. Horrible!

I'm on gabapentin and venlafaxine but still no relief from the fatigue! In a way I think I've suffered from fatigue longer than the pain. When I think about my sleeping habits etc going back I've probably had fatigue issues for over 7 years. Bleurgh!

Seriously I'm sick of feeling rubbish! I'm 31 but I feel like an old woman! If I try and just live my life I get payback so bad. Grrr!
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Re: Fibro and ME?

Postby GaryFx » Wed Mar 04, 2015 6:45 pm

i was diagnosed 15 years ago with ME and it was horrible, I was sleeping upto nineteen hours a day and found it very hard to move, just a general stiffness all over. It caused me a lot of time off work and I began to get very low , but some how I found the courage to carry on and it started to become more manageable, you have to learn to live with it and not fight it all the time, if you need to sleep then do so and if you can't sleep at night , don't lay there punishing yourself just get up and do something. As the years have gone on the diagnosis has been changed from ME to CFS so I've always thought of them as the same thing, about five years ago I was diagnosed with Fibro and things have steadily got worse but I wouldn't say it has made me feel anymore fatigued, don't get me wrong there are still days where I just have to sleep but that feels like the old ME and not the Fibro but of course I could be wrong. But all the other symptoms of Fibro are totally different to that of ME and I would say are a lot more painful and constant.
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