How can you believe in CFS but not Fibro?!

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How can you believe in CFS but not Fibro?!

Postby Zia2014 » Wed Jul 23, 2014 12:15 pm

Genuinely left me shocked...

I went to Occ Health yesterday, and it was weird. First he told me "not to allow myself to be pigeon-holed into having a diagnosis" (WT...???)

At first he said he didn't believe in CFS or Fibro, but a few minutes later started talking as if I had CFS (and apparently he's seen hundreds of people with it) and then kept telling me he didn't believe Fibro existed!

I thought the main differences were one is more pain that fatigue, and vice versa, and the other difference was that with one you feel better after exercise, and vice versa? Am I wrong? How can you think with two conditions that are similar that one is real and the other not?? :crazy:

Anyway, I also didn't like him cos he called me plump (ugh, horrible word) and had no ideas for how to help me at work - which was the whole point of the bloody session!

Gem
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Re: How can you believe in CFS but not Fibro?!

Postby ..:: lisa ::.. » Wed Jul 23, 2014 2:22 pm

Omg, the thing that shocked me most was that he called you plump!!!!

He sounds like an idiot tbh!!

Are you seeing him again?

I have been told its likely I have both and I know there are a few members that have both too so he is talking out of his :nono:

My understanding is fibro causes a lot of pain and cfs causes extreme fatigue but often symptoms overlap...

I'm sure someone with a better understanding will explain it a lot clearer
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: How can you believe in CFS but not Fibro?!

Postby Zia2014 » Wed Jul 23, 2014 2:40 pm

Thanks Lisa!!

Yes I was rather taken aback by the word plump - especially as he began by saying "how shall I say this...?" Err, the medical term is obese and I'd rather he use that tbh. Plump makes me think of an older generation of my family :oops:

Luckily I don't have to see him again, can't wait to see what he puts in the report though! I get to see it first so I'll make sure I speak to my boss before she gets it so she understands what was discussed.

If you don't mind me asking, how did you get diagnosed with both? I always thought it was one or the other.
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Re: How can you believe in CFS but not Fibro?!

Postby ..:: lisa ::.. » Wed Jul 23, 2014 3:11 pm

Well, I saw a psychiatrist yesterday who spent around an hour and half with me going through everything, I don't think he is able to diagnose either properly but from my history etc he said it was likely I had both but he wanted to speak with gp in case there was something rare the neuros had missed as there's so much going on and it doesn't all add up.

I think there are people who think it has to be one or the other, just like I don't understand how people can have lupus and fibro or ms and fibro or any mix of those, how do you distinguish between them? They are so similar but it happens, I guess it comes down to what the diagnosing person (that doesn't even make sense ha!) believes in themselves as to what label gets given...

Going through so many different specialists who have blatantly told me they haven't got a clue, I'm taking his opinion and running (well hobbling :mrgreen: )

Having said that I have another appointment next week so will see if they come up with anything different :roll:
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: How can you believe in CFS but not Fibro?!

Postby Zia2014 » Wed Jul 23, 2014 3:31 pm

He told you to run?! Blimey, I can barely walk. Yeah, I seem to be getting different opinions from everyone (4 GPs and 3 specialists so far), it's confusing isn't it.
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Re: How can you believe in CFS but not Fibro?!

Postby ..:: lisa ::.. » Wed Jul 23, 2014 3:42 pm

Zia2014 wrote:He told you to run?! Blimey, I can barely walk. Yeah, I seem to be getting different opinions from everyone (4 GPs and 3 specialists so far), it's confusing isn't it.


Heehee no I decided to take his opinion and run, I'm not questioning or asking for anymore second opinions.

Yes, I read your comment on another post saying you'd been told a stressful event had triggered your symptoms, that's what the first neuro told me, I was hysterical at the time and told him the only stressful event was THIS

2nd one told me I had hemiplegic migraines but went on to prescribe me amitriptyline at an anti depressant dose which didn't work, 3rd neuro sent me for evoked potentials and lupus testing then on speaking with the first neuro basically told me it was all in my head and to see psychiatrist...

That's where I'm at now, looking like I will be sent to see someone else, he has already told me he will see me one more time after he's had a think then probably refer me to some physical disability team.

All I want is to either get better or some help managing these symptoms, he has been the most helpful person I've seen yet and I was dreading going, I really didn't want to hear, "it's stress induced" one more time, I think I probably would have had a breakdown!!
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: How can you believe in CFS but not Fibro?!

Postby Zia2014 » Wed Jul 23, 2014 4:00 pm

It's so frustrating isn't it, especially when you go down one road and then find out you didn't need to! I need to make some decisions about my future pretty soon (moving, jobs, etc) and I can't until I know what is wrong with me and how I can manage it, whether that be a cure or what.

I appreciate that things have to be ruled out but it is so slooooooooow. Especially when referrals go missing! Am going back to see the helpful GP tomorrow so hopefully I will get a rheumo referral out of that, will ask him about the local CFS team as well.
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Re: How can you believe in CFS but not Fibro?!

Postby FluppyPuffy » Wed Jul 23, 2014 4:07 pm

Running isn't something I can really manage either, at best I can rustle up a bit of a scuttle when the doglet goes bouncing outside to try and eat the postie, but if I have to do it a few times thru the day, it rapidly slows to a shuffle :penguin: :penguin: :penguin: :penguin:

For some, FM and CFS are seen as one condition, with fatigue being at one end of its spectrum and the hurtys at the other end. This is due to there being so many similarities and overlapping symptoms and problems associated with both.

For others tho, they are seen as 2 separate issues which, whilst sharing a number of similarities, also have some differences. The reasoning behind which dx is given comes from how symptoms present themselves. If the hurtys seem to have the upper hand, then an FM dx would be more likely, whereas CFS would be more likely to be dx'd if fatigue is the more prominent problem.

I have both of them in my collection of pawleynesses and for me, there are some very subtle differences which can indicate which one Kevin is going to mess with. If it's FM, then he turns my hurty~meter all the way up to 11, incl headache/migraine intensities, as well as turning my brain power all the way down to -11 and the foggy~headedness comes rolling in even quicker.

If it's CFS, then he pours what I can only describe as the heaviest substance in existence into my body which, as well as making it feel like it weighs 100 tonnes, makes it really ache right the way thru to the middle of my bones. Then, he makes me move so that I can feel energy reserves that I don't have anyway, draining from me with each step or movement. He also makes me feel stuffed up, as if I'm coming down with flu, something I barely experienced before the fatigue started shooting thru the end of the scale. When I'm like this, I'm not fit for neither man nor beast, so all I can do is rest until things feel like they're starting to lighten up a little.
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Re: How can you believe in CFS but not Fibro?!

Postby ..:: lisa ::.. » Wed Jul 23, 2014 4:23 pm

FluppyPuffy wrote:
I have both of them in my collection of pawleynesses and for me, there are some very subtle differences which can indicate which one Kevin is going to mess with. If it's FM, then he turns my hurty~meter all the way up to 11, incl headache/migraine intensities, as well as turning my brain power all the way down to -11 and the foggy~headedness comes rolling in even quicker.

If it's CFS, then he pours what I can only describe as the heaviest substance in existence into my body which, as well as making it feel like it weighs 100 tonnes, makes it really ache right the way thru to the middle of my bones. Then, he makes me move so that I can feel energy reserves that I don't have anyway, draining from me with each step or movement. He also makes me feel stuffed up, as if I'm coming down with flu, something I barely experienced before the fatigue started shooting thru the end of the scale. When I'm like this, I'm not fit for neither man nor beast, so all I can do is rest until things feel like they're starting to lighten up a little.


That description is so perfect! And it varies every day or sometimes hour by hour.
It's like I can literally feel the life being drained out of me and if anyone requires any form of participation from me they had better crack on and tell me what before my battery dies completely!

Such a great description.

Can I ask do you have or ever had any issues with smell & taste?
This is what is throwing people off the scent (pardon the pun) psychiatrist seems to think it might be a separate issue from fibro and cfs, I have read that it can accompany cfs though.....
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: How can you believe in CFS but not Fibro?!

Postby FluppyPuffy » Wed Jul 23, 2014 4:56 pm

What problems are you having with smell and taste???

It's not unusual to be sensitive to certain smells. It's something that has been with me since being a child. I couldn't stand to be in the same room as someone who was wearing a particular perfume or body spray/deo. And when it came to other strong smalls, one whiff and I would literally be :puke: :puke: :puke: :puke: :puke: :puke: :puke: :puke: for the rest of the day.

At times I've often been able to smell something, but when OH has gone to see if he can find it, there hasn't usually been anything there. This tends to be the rancid sort of smell that a soggy and dirty old towel or dishcloth gives off when it has been left to fester somewhere far too warm. There are a few other mentions of phantom smells on here, probably down in the forum depths where the Dust Bunnies meet up if you want to do a bit of a search.

The only taste issues I've had tend to be related to changes in meds, when something is either increased or added to my cocktail. As I get used to the change, my taste starts coming back.
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Re: How can you believe in CFS but not Fibro?!

Postby Zia2014 » Wed Jul 23, 2014 5:39 pm

Great description Fluppy, thanks!

Lisa, I too get weird smell and taste. I have always hated smoke, but now it stays in my nose for hours after the smell has physically gone?! And I often get a metallic taste, had it loads early on, then it went, and now it's back!
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Re: How can you believe in CFS but not Fibro?!

Postby ..:: lisa ::.. » Wed Jul 23, 2014 5:52 pm

Yes something similar but it's more odour identification.

I have something called parosmia, where all odours smell bad.
So all food smells and tastes offensive and indistinguishable, all perfumed scents smell of rotting fish, my dogs farts smell the same as cat food, which smells the same as chicken so I came to the conclusion that what I can smell is protein.

I can't smell rotten food, gas, petrol etc

I haven't been able to eat properly for 2 years.

It's like someone rubbed out my smell memory so I've had to teach myself what smells are associated with certain things, but these smells are things I've never experienced, I couldn't even describe some of them.

It's very odd and very confusing but seems that smell issues are more common than people realise with fibro
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Re: How can you believe in CFS but not Fibro?!

Postby Zia2014 » Wed Jul 23, 2014 5:56 pm

That sounds horrible Lisa :( Mine at least come and go. I think there are lots of things going on in the brain and so often they affect each other.

I'm sure I read a while ago that we know more about the depths of the ocean than about the brain. What a sobering thought...
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Re: How can you believe in CFS but not Fibro?!

Postby ..:: lisa ::.. » Wed Jul 23, 2014 6:51 pm

I just had a thought, do you think this man believes in cfs because it can sometimes be traced back to a viral infection?

Please some one correct me if I've got confused, I know some people see chronic fatigue syndrome and M.E as two separate disorders, but were they once the same thing?
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Re: How can you believe in CFS but not Fibro?!

Postby *Lisa* » Thu Jul 24, 2014 11:06 am

Zia2014 wrote:Genuinely left me shocked...

I went to Occ Health yesterday, and it was weird. First he told me "not to allow myself to be pigeon-holed into having a diagnosis" (WT...???)

At first he said he didn't believe in CFS or Fibro, but a few minutes later started talking as if I had CFS (and apparently he's seen hundreds of people with it) and then kept telling me he didn't believe Fibro existed!

I thought the main differences were one is more pain that fatigue, and vice versa, and the other difference was that with one you feel better after exercise, and vice versa? Am I wrong? How can you think with two conditions that are similar that one is real and the other not?? :crazy:

Anyway, I also didn't like him cos he called me plump (ugh, horrible word) and had no ideas for how to help me at work - which was the whole point of the bloody session!

Gem


I would put in a complaint because what he personaly believes in should not effect his work. Whether or not he thinks fibro is real or not is irelavent. He should be treating you for the illnesses/conditions hes been asked to do whether or not he thinks its real.

This attitude is not professional. The OT is there to help you with aids and adaptions and anything else that you may need. Hes not qualified to say what he thinks!

Just because hes seen loads a people with a certain illness does not qualify him to make a diagnoses/make you think you have something. If he had any concerns over your health he should be discussing this with your GP/Consultant.

Again any professional would not call you "plump"!! :evil: :evil: :evil:

You can feel and see my fibro. My main symptom is stiffness. You can feel how tight and tense all the muscles are, feel them in spasm and one nurse commented on my walking saying she could see i had fibro because of how stiff i walk.

The dentist can feel the tightness in my jaw and neck and as a result i have many a time been told he cannot treat me as i cannot open my mouth wide enough :shock:

When i was in an ATOS medical he asked me to turn my neck. As i tried it made a loud CRUNCH :yikes: same with when he asked me to move my legs my knees cracked then also :yikes:

..:: lisa ::.. wrote:I just had a thought, do you think this man believes in cfs because it can sometimes be traced back to a viral infection?

Please some one correct me if I've got confused, I know some people see chronic fatigue syndrome and M.E as two separate disorders, but were they once the same thing?


M.E can be traced back to a viral infection like glandular fever. CFS is persistant fatigue that may not come from a virus but from chronic conditions like fibro as the body is constantly fatigued from fighting pain. Just my personal opinion there.

Nowadays CFS and ME are classed as 1 illness but they can differ slightly. M.E is when you cannot get out of bed, need help with drinking and eating etc..as your too weak with fatigue to do anything. Your bedbound most of the time and can barely move from weakness and all over body aches which is mainly in the joints like knees and elbows

CFS is when you get drained and weak and tired after doing the slightest of activities and tasks. You have days where your in bed and days where you can manage things. You do get the aches and headaches and all over body exhaustion. With M.E its more severe (apparently)

Again this is my personaly opinion. May not be correct.

This OT needs a :face-slap:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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