I don't know if I have Fibro or CFS? New to all this - Help!

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I don't know if I have Fibro or CFS? New to all this - Help!

Postby Tara100 » Tue Nov 18, 2014 1:36 am

Hello

I've had symptoms for so long (approx all of my adult life, and I'm 47 now) and only recently found through Googling that I may suffer from Fibro or CFS.
I went to my doctor and told her my symptoms, and she said it sounds like Fibro, and when I mentioned CFS, she dismissed it. That's where I am confused, as both are so similar...

Can you help me through the fog please?


These are my main symptoms:

* Always exhausted and sleepy (I crave sleep all the time) - I can barely wake up after 8-10 hrs of sleep, and I can fall back to sleep instantly for many more hours if I let myself.

* I have no short term memory at all. My family and fellow staff are alarmed at how I repeat conversations. I cannot remember where I have put things, or if I have completed actions at home / work. I often struggle to remember my past also (long term memory)

* No enthusiasm for anything, every task seems impossible to do.

* Depressed

* Often I have aching legs / shooting pains in them from top to bottom when I lie down in bed.

* Irritable Bowel Syndrome . bloated stomach often with some pain.


If I had to choose my main debilitating problem, it would be the constant exhaustion.


Can anyone advise me please?

Thank you
Tara
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby Shirleyac » Tue Nov 18, 2014 1:56 am

Am I right in thinking that you havent yet been formerly dignosed? My fms was dx by a rheumatologist who pressed on the sore points defined by fms. My Cfs was diagnosed earlier than this and it was based on my bad memory ,word blindness, extreme fatigue joint soreness, inability to walk far or do tasks for any length of time (probably more things that I cant remember). The one thing that isnt a symptom but a product of cfs/me and fms is depression as due to your life being snatched away from you in such a cruel way its hard for anyone to not feel depressed, so I would never say it was a symptom . I do hope this helps you or at least points you in the right direction xxx
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby NiceConversations » Tue Nov 18, 2014 3:02 am

Hi Tara,

it is possible to have both Fibro and CFS. The Fibro can come with fatigue and the CFS can come with pain.

One of the rheumatologists I saw earlier this year told me that he always tries to categorise by severity of symptoms: if the main issue is widespread pain, that leads to fatigue, it is mainly fibro. If the issues are disrupted sleep, then he'd look at CFS first.

I have been officially diagnosed with both conditions and truth be told, when I have symptoms, I will never quite know which of the syndromes is "responsible" for it :crazy:

The best thing is to get an official diagnosis for your symptoms. Ask your GP to refer you to either a rheumatologist or a specialist fibro multidisciplinary clinic or potentially to a sleep study (to find underlying causes for the fatigue). In my experience, most GP only want to follow one route at a time, so if your GP thinks it's fibro, he might want to investigate that first.

If you then tell the rheumatologist about your other symptoms as well, he can include potential CFS in his report. You can then ask the GP to investigate for that further and so on. It can be a long journey to complete diagnosis and sometimes feels like running in circles, but what matters is that you get some help.
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby Tara100 » Tue Nov 18, 2014 3:25 am

Thank you both of you :-)

My doctor just gave me an NHS Fibromyalgia print off to read, and said that when I go back to see her in the future, I can let her know if I feel that I 'fit' that.
I will bet my house that no investigations will be done, as my surgery isn't great, and she said there's no definitive way of testing for Fibro.
This is what makes the problem even harder; battling to get heard or even taken seriously by GP's!

Tara x

p.s
I don't feel any pain when any points on my body are touched or given any pressure, so I'm thinking ME / CFS? Right now I'm lying flat in bed and have the pains I mentioned all over my legs though.
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby NiceConversations » Tue Nov 18, 2014 3:35 am

CFS/ME can cause pain, due to the disrupted sleep pattern. Another thing to look into would be Restless leg syndrome, which can also come with pain in the legs.

Fibro has widespread pain and is being diagnosed partly by the trigger points. If you don't react to them at all, it doesn't sound like you have Fibro to me.

If your GP doesn't pro-actively refer you, maybe try getting info on the condition you think it will fit the most and print out where the NHS specialist unit for that particular one is. I did this with my GP and printed out the "How to refer patients" page, gave it to them and told them to fill it out. Sometimes that works better than asking for it!

Otherwise, maybe look into changing your GP, if you are not getting the support you need?
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby FluppyPuffy » Tue Nov 18, 2014 9:15 am

:welcome: to our little FibroFamily Tara :cow-wave: :cow-wave: :cow-wave:

I've moved you into here with this being your intro post, it's a more suitable board and you won't drop down into the deepest, darkest depths of the forum where the DustBunnies dwell quite as quickly as you would have done where you had originally posted :-D :-D :-D

I'm another with both dx's in their collection, and for me, whilst there are a lot of shared/cross~over symptoms, I do have some slight differences between the 2 conditions which help give me an idea of which one is flaring up. It's not foolproof tho, so I do sometimes think it's one when in fact it can be the other, or even both at the same time deciding to try and floor me.

These slight differences include an aching heaviness added to the regular pain I have each day, accompanied by a wave of fatigue which is even more draining than the levels I have each day. When comparing things, this pretty much always comes with a CFS flare~up. This isn't the same for everyone tho, it's just how it currently affects me.

Have you tried keeping a diary of symptoms and things to see if you can identify any possible triggers and connections between what you experience??? Doing this can be helpful in a number of ways, such as helping create an overall, day~to~day picture of what life can be like for you, acting as a prompt or reminder when trying to explain about how you are affected, as it's pretty much guaranteed that some points will be missed or forgotten :facepalm: :facepalm: :facepalm: If not, it might be something to consider doing. If it's something you already do, then maybe consider taking it to appts with you to show what has happened on various days, at different times etc.

The touching of points that has been mentioned refers to the Tender Point Test which is often used as part of the dx~ing process. The linky explains more about it than I'm able to at the moment :oops: :oops: :oops: There is no definitive way to test for FM currently, it tends to be dome by a process of elimination of other conditions which share a similar range of symptoms and problems. Tests which help identify these other illnesses tend to be run, and if there is no indicator for them, they will be discounted as a possible cause. When everything has been discounted, that tends to be when the FM card is given to explain what someone is being affected by.

Do try going back to your GP and asking about a referral to Rheumatologist or other specialist/consultant that deals with, or has the interest in such conditions. If this proves fruitless, then consider seeing a different GP, and if this proves futile, then do consider changing surgeries. A few calls to ones in your area and asking questions about whether that have patients with FM and/or other similar conditions registered could help you find a more supportive and understanding GP.

Think I've waffled on at you for long enough now. Have a bit of a looky and a read around the boards as you find your way around the place. Anything you're wanting to know about, just ask and we'll try and help you with it :cow-wave: :cow-wave: :cow-wave:
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby migrembe » Tue Nov 18, 2014 9:49 am

Hi and welcome

First you need an official diagnosis as FMS and CFS can have the same symptoms of some other diseases, so i would press for a referral to a Rhuematologists.

Someone else wrote about depression not being a symptom but i believe it is. In fact it was the first symptom i had that there was anything wrong with me long before i was diagnosed, like years before. I was constantly lethargic and tired since i was a teenager and i am now 51.

i was diagnosed with FMS 4 years ago after i fell downstairs and my body didn't recover from the pain even though i hadn't broke anything.

As for CFS everyone with FMS has chronic fatigue because the mind/brain doesn't go into deep sleep. Some are diagnosed with it officially and some are not, but we all have it. When i mentioned it to my GP she said probably and wrote it into my notes.

Even though i had been ill for many years once i was diagnosed i suffered very deeply from grief as i lost my life - i worked as a staff and my last child was just just going off to university and i had lots of plans to work and to travel and now that's all gone.

So get a diagnosis and i would ask for counselling too, it really helped me.

Beverley x
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby morette5 » Tue Nov 18, 2014 2:18 pm

You could have both. I have had both separately and together.
They are separate, although fibro has an exhaustive state when you have over done things.
Fibro's giving the inability to get out of bed in the morning and running out of energy very soon after is very similar to CF's sleep for days or weeks and still feeling like just a couple more hours sleep will do it, but it never does.

Hang in there.
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby charlotteerika » Tue Nov 18, 2014 4:57 pm

I have read articles by doctors which state that CFS sufferers have chronic fatigue only and Fibromyalgia sufferers have chronic fatigue with pain. They state that the only difference is the existence in pain in Fibromyalgia. Hope this helps.
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby Zia2014 » Tue Nov 18, 2014 6:30 pm

charlotteerika wrote:I have read articles by doctors which state that CFS sufferers have chronic fatigue only and Fibromyalgia sufferers have chronic fatigue with pain. They state that the only difference is the existence in pain in Fibromyalgia. Hope this helps.


That's why the CFS clinic turned me down. But everyone I've spoken to with CFS gets pain as well as fatigue, so I don't personally think that's true.
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby Tara100 » Tue Nov 18, 2014 11:06 pm

Thank you all so much for taking the time and trouble to reply to me. Makes me feel quite emotional (in a good way)

I'm going to see the doctor next week, and I'll ask to be referred to the rheumatist ( if that's what they are called? :-) )

I'll be back with news.

God bless you all
Tara x
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby Polaris » Wed Nov 19, 2014 6:43 am

There are many similarities between FMS & CFS although FMS sufferers experience more pain and CFS is more fatigue. Pain levels in Fibromyalgia are considered far higher than rheumatoid arthritis. Many years ago while researching I found a CDC (Center for Disease Control USA) report that suggested 75% of people with CFS (ME) would develop Fibromyalgia while conversely only 25% of people with Fibromyalgia would develop CFS. On average it takes about 5 years for a diagnosis.

Rheumatologists deal with FMS because originally it was considered an inflammation (that's the myalgia bit) but more recent research suggests it is primarily a problem with the nervous system. Neuroscientist Dr. Frank Rice, and neurobiologist and pain specialist Dr Charles Argoff of Albany Medical Center in New York, found an enormous increase in the number of sensory nerve fibers within the blood vessels of the skin on the palms of fibromyalgia patients' hands.
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby TNK* » Wed Nov 19, 2014 10:46 am

Hello and welcome to site xx

like others have said, CFS can sometimes come hand in hand with FM....my GP came up with the dx of FM earlier this year and prescribed me some Ami to see how I got in with it, and then asked me to go and have a read up on the subject (My GP knows me well and that i have a medical background so knew i would be ok doing this on my own) I went back after the first box of Ami was finished and I mentioned that i agree with her about the FM but also after reading up, I thought I had a good amount of CFS thrown in for good measure, and after hearing about the bit of progress i had on the Ami, she tended to agree with me. I go back to my GP every other month or so just for an update and to let her know how I think the mi is working.
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Re: I don't know if I have Fibro or CFS? New to all this - H

Postby Zia2014 » Wed Nov 19, 2014 5:53 pm

Polaris wrote: On average it takes about 5 years for a diagnosis.

Rheumatologists deal with FMS because originally it was considered an inflammation (that's the myalgia bit) but more recent research suggests it is primarily a problem with the nervous system. Neuroscientist Dr. Frank Rice, and neurobiologist and pain specialist Dr Charles Argoff of Albany Medical Center in New York, found an enormous increase in the number of sensory nerve fibers within the blood vessels of the skin on the palms of fibromyalgia patients' hands.


Wow, that length of time is scary :(

Weird you mention the palm of hands thing, over the last week or so my left palm has been incredibly itchy, painful and weird feeling.
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