Rheumatologist diagnosed fibromyalgia after 20 min consultation

veghead

Hi all

Not sure if this is in the right place but we'll see!

I've been suffering with joint pain for the past few years, started with knee pain and progressed to the point that I feel pain in fingers, elbows, right hip, shoulders, neck and knees. I eventually went to see Dr last year who sent me on for x-rays and bloods, all came back fine so I was referred to a Rheumatologist. I went for my appointment with him yesterday and after 20 minutes he diagnosed me with Fibromyalgia, I was so relieved to know that I wasn't imagining it all that I left without further questions. However, today after researching it and thinking about it, I dont think it is that, as a lot of the symptoms and descriptions of Fibro pain dont match with my symptoms and pain . I'm also starting to think that he was a bit quick to diagnose me, I'm wondering why he didn't refer me on for further tests, like MRI, etc. It seems that Fibro is usually only diagnosed when you have ruled out all other possibilities and the symptoms match up which I dont think mine do.

I'm just wondering what other people have experienced and whether I should go for a second opinion as it just seemed too quick to make a diagnosis to me. Having said that, I dont have any experience dealing with Consultants as aside from the pain, I've always been very healthy.

Thanks for any help, its very much appreciated!

Gatling

I had similar only thing that's kept me out of fibro diagnosis was loud joint snapping and several dislocations 3 years waiting for a bone Scan and then Mri ruled most arthritic conditions out ,
Bloods were normal too, I'd personally ask for a 2nd opinion if your not happy

veghead

Gatling - You just reminded me, I also have like a crunching popping sound in my knees and slightly in my elbow. When I asked what that was he just said my knee caps were loose and to exercise more to fix it.

I'm not happy in that I did think he would spend a bit more time doing due diligence rather than a quick "does this hurt" poking of my joints before giving me a full diagnosis. Maybe I'm niave, as I say, Ive never had to deal with Consultants before, so just wondering whats normal practice when you go to see one. Im leaning towards going to a different Dr but just wondering what is the normal way these things are done!

Turtle_

Gatling wrote: »

I had similar only thing that's kept me out of fibro diagnosis was loud joint snapping and several dislocations 3 years waiting for a bone Scan and then Mri ruled most arthritic conditions out ,
Bloods were normal too, I'd personally ask for a 2nd opinion if your not happy

Pain, dislocations and snapping sounds from joints are common in EDS.. Which is rarely noticed by doctors...

misstearheus

20 years! Wow! Poor you. I'm going into my fifth year and I thought I was bad. Well research suggests it's caused by 1 of 3 things: Stress, a Tragedy, and I can't remember the third. Oh it could be a prolonged injury I think? Not sure. Anyway nothing of any high-end major dramatic traumatic stressful scale has ever happened to me in my life so I don't know where this has come out of! All I know is that over-night four and a bit years ago I just felt like I instantly got struck down with something, and I've never been the same since. That "something" comprised of 3 things, that 1) I constantly felt Hungover sober lol! 24/7! That 2) I felt bruised practically all over my body even though I had no physical bruises on me to explain this bruised feeling. And, now I can't think of the third point hah! I'll come back to it or hopefully it'll come back to me.

I 99% think I have Fibro, the way it affects me is the Trigger-points that are displayed in all the Anatomy Diagrams hurt when pressed in or pushed on, feeling like I am bruised in those same places in my body as in the Diagrams. I must check again but I don't think my sore-ness is in the specific exact location as the Anatomy Trigger-points you'd see in Body Diagrams of it online, but they all or mostly all would be in the same region/zone like, Glands, Neck, Shoulder-blades, and all further down, just not the exact specific marker on the Anatomy Diagrams but near-enough around there like.

I can't medically say if indeed Fibro is experienced in different ways, if my experience of whatever I have is 1 way for Fibro to present itself, if constant always-present pain is another variation of it, maybe it is I don't know. I feel bruised in certain parts of my body, it's nothing really serious in 1 way because it's not constant actual physical pain the way it presents for me. BUT, my worry is, because of the way it's happening to me, that, it will have long-term effects on my body and my body's wear-and-tear, and on my Immune-System. That's my worry really. Can cope with feeling bruised, it's slightly different than if I were all the time in physical pain I think? Well I think it is?!? I really don't know what's what anymore!!

But I definitely have something specific 'cos like a few parts of your body feeling like you're bruised when they are pressed-in or pushed on should be a specific enough incident for a Doctor to know what's wrong with me shouldn't it!! You'd imagine it would be something telling-enough for a medical person to know what's wrong with me 'cos it's such a specific indicator that my body is not working right!! It's so frustrating and annoying that for whatever reason I'm un-aware of, - it AIN'T specific enough for a Doctor to know or diagnose what's wrong with me!! :mad::( Even though it IS indicatory and it is a specific occurence/event! IT IS! Gahhhh am like a broken record going on about it at this stage!!

I don't even know what pain or sore-ness is really?!? What's the difference in pain and sore-ness?!? How does anyone know if they're in pain or if they're sore?!? What's the difference in the 2?!? Do I say I'm in pain or do I say I'm sore I don't know which I am or how do I tell 1 from the other?!? I don't know what to think!! I just don't know anymore!! Actually some Anatomy Diagrams of it have 11 Trigger-points and other Diagrams of it have 18 Points, don't know why that is, maybe it's just Researchers are better-informed and more au-fait with the illness as time goes on. And I could be wrong I will check this out later, but, if I'm not mistaken, the Trigger-point markers can be slightly different in several Body Diagrams of it.....

I keep meaning to go to a Fibromyalgia Meeting, I think there's a Group in my County and say I'm sore here, here, and here, and they'll hopefully all say oh I know exactly what you mean I'm sore there too!

I'm okay with only being middle-aged and having to live like a stooped-over elderly-lady always minding themselves and having to live a fragile life on a daily basis when I'm out and about so that people don't bump into me in case I experience this bruised feeling on some part of my body! But it means I'm always having to be minding my body, and it's stupid! It means I have to live in a robotic stance, afraid to move! 'Cos I'm afraid if some part of my shoulder is sore or if I turn my head too much or too far it'll set off soreness in another part of a Trigger-point further up on me or something! Always have to be minding myself now! There's a Saying about being wise for yer years. But I don't think it was supposed to be take this literally!! I don't want to be elderly just yet thanks!! But like I said, I guess the only way to look at it is, being in physical pain might be worse. I'm having awful trouble with my neck lately, it makes for very robotic dancing my way through the day to get through it hah!!

I see on a lot of Forums, some people that have been diagnosed with Fibro speak about Arthritis-like symptoms, and actually 1 Doctor has said to me that Fibro can be experienced in different ways, some suffer with it by way of stiffness when they get up in the mornings.

Having awful difficulty with Doctors trying to get anywhere with this myself at the moment, it's nightmarish. I kind-of heroically lol bullied my way into a G.P. (hard thing to do when ya need to get to the bottom of being sick but you've no physical proof and no-one will believe ya lol!!) that I randomly fortunately found out, that they diagnosed somebody with it, and I was so brave going into the Appointment to see them and stand my ground and everything! and they did say I was "suggestive of Fibromyalgia," but, that's neither here nor there!! :rolleyes::(:rolleyes: I was ecstatic on such a positive outcome but then I quickly realized it wasn't such a positive outcome at all, it was a say-something-to-shut-me-up-approach outcome lol. I thought I might be at long last at least going in some clear direction and get myself sorted out and finally have a Diagnosis, but instead their wait-and-see attitude they adopted is really a waste of time as it turns out "Suggestive of Fibromyalgia" is essentially nothing!! A whole big fat Sack of nothing!! A waste of time! Total vague-ness personnified like a Boss like!!

From your couple of sentences O.P., my personal reading-up of it thus far, - wouldn't lead me to Fibromyalgia in your case, but that's only a non-educated personal guess on my part! There's a whole host of other things that you havn't even touched on that wouldn't sway me towards Fibro for you. But a second opinion can only help anyways, it won't hurt pardon the pun lol. Fibro could mean being fatigued unable to get out of bed some day, could have Bowel problems another day, could be forgetful with horrendous Brain-Fog another day.

I remember reading someone's Blog who has Fibro and they mentionned their hand hurts when brushing their hair, I couldn't believe I found somebody else to say that it hurts to do such a simple daily task! I tend to feel like I constantly have Headphones on my head! If yer ever wearing a Head-set for a while, that 10-second-feeling ya get when ya take them off afterwards that feels like you're still wearing them but the feeling goes away again after a few seconds? - I feel like I always have Headphones on me! I noticed somebody else has described it as like when yer getting yer hair washed at the Salon! But I think I have it sussed now, that whatever the feeling is, that actually attributes some way to my brain-fogginess, it's kind-of headachy in a way but it's not really a Headache! But it accentuates being forgetful anyways, that much I reckon is true! But again, this is all my own personal experience of things, so take from it what you will.

Brain-fog aside, the 2 biggies would be Chronic Pain, and Chronic Fatigue, but it's a mixed bag of things too I find, along with Brain-fog, Bowel trouble, sleep and insomnia trouble, communication aspects, sensory stuff.... I remember seeing a load of Slides on it about Environmental contributors and Humidity and extreme cold were mentionned, and I firmly believe I'm allergic to Humidity! I hate it! What else.... I can't think now....

I have been to a handful of different Doctors to try make headways but havn't been successful. A few Hospital visits and Scans and Blood-tests etc. Tests, Scans etc. here and there over the last few years too but again no success. My physicality is all in order it seems. Heart, Lungs, Liver, Kidneys etc. all above-board lol and a-okay so there's nothing wrong with me on the outside! My neck is starting to become a serious hindrance now though trying to hold my head up! So it's starting to get a little serious now..

A couple of the telling factors for me were areas of soreness such as sore glands and Collar-bone. My Collar-bone currently and always has hurt like a mo-fo! A lot! And eventually then I started investigating further, and apparently, Glands and Groin area being sore is common-place for people with Fibromyalgia, and that's when things started clicking for me, with my Glands, and also finding Smear really painful too!

I went for an Ultrasound one time, and I reckon almost every place on my body that he pressed in on with his Scanner I said ow lol! It was as if he somehow knew where I'd be sore before he moved on to the next Body-part that he was checking! It was so amazing in a way 'cos the Ultrasound was so exacting of where on my body I was sore!! Yayyyyy at long long last this man can see very clearly FULL PROOF lol actual in-the-flesh proof lol, that I'm in pain!! Yayyyyy I'm gonna get my Diagnosis now. But my delight didn't last too long!! The Report stated there was nothing found! ;( ;( Hellishly heart-breaking! I was absolutely devastated!! So so close but so far!! Understandably, it was probably out of his hands, they wouldn't dream of going any further in terms of telling me anything about what they think or what might might be wrong, I guess I understand that, he only does what he's supposed to do in his role, scan me for whatever reason he's scanning me lol, he isn't getting paid to do anymore, and he likely wouldn't be up for doing any more outside of his remit in case he gets fired lol, so he just does his job, all that's required of him! and moves onto the next patient! Fair enough, he may genuinely not have found anything in terms of what his Job-Role is or my physical organs all being okay and functioning and in working order.

But it's the absolute pits to think that I left there crying in pain, he knew the source of the pain, I reckon he knew full-well what was wrong with me too, but he couldn't / wouldn't / wasn't allowed to do anything about it! Ooooh devastated doesn't even begin to describe it!! Ultrasound was the only one SUCCESSFUL lol thing that could clearly distinctly prove and accurately display where my pain source(s) originate from and Report said Nothing was found! :rolleyes: Ya can choose between laughing or crying!!! Or swearing!

He even went out of the Room before we finished-up to check his Write-up with a Senior and run it by them. I would dearly love to have been a fly on the wall for that conversation, and see did he mention anything about that the Exam he just carried out actually caused the Patient to be in pain!! :rolleyes: Wouldn't it have been so great if he cared enough or was paid enough or ballsy enough to call in somebody else into that Ultrasound Exam, tell them the story that I'm definitely obviously in obvious pain and between a couple of them come up with a plan or reason or get referred on or do something pro-active to get me seen by the appropriate Medical Personnel that I need to be seen by and get looked after and diagnosed etc. :rolleyes::( But no! He just did his job and no more! If he only had.... Taken the plunge... Gone one step further... Ooh if only he had... I could be diagnosed and be getting appropriate treatment etc. by now......

Anyway enough of the sorrow and sadness and misery for now! Just gotta keep motoring! Plough on and keep moving forward! So that's my experience of things! Have one more thing to talk about which is Lymph-nodes, but will leave it till another time. Hands are sore typing now!! Don't know if any of the above rings true with you or sounds familiar but that's my tale of woe! Hope it has been of some help and insightful!

Have just remembered, along with the Trigger-points in the Anatomy Diagrams, I recall it being said, that another Trigger-point, if ya go to press it in or push on it, - is the stretch-of-space running diagonally right below your Kneecap. On each Kneecap if ya touch the top and run outwards and down diagonally in an upside-down v-shape, - the diagonals just below the Kneecap are sore too, and I found this to be true.

Only for the Internet and Googling and research and investigating and all the reading-up I do I would be lost!! Doctors can sometimes seem or appear to be clueless!! It seriously is the Internet and Google that's aiding me in coming to my conclusive Diagnosis! Would be lost without the Internet!!

lc_lmcg

misstearheus wrote: »

20 years! Wow! Poor you. I'm going into my fifth year and I thought I was bad. Well research suggests it's caused by 1 of 3 things: Stress, a Tragedy, and I can't remember the third. Oh it could be a prolonged injury I think? Not sure. Anyway nothing of any high-end major dramatic traumatic stressful scale has ever happened to me in my life so I don't know where this has come out of! All I know is that over-night four and a bit years ago I just felt like I instantly got struck down with something, and I've never been the same since. That "something" comprised of 3 things, that 1) I constantly felt Hungover sober lol! 24/7! That 2) I felt bruised practically all over my body even though I had no physical bruises on me to explain this bruised feeling. And, now I can't think of the third point hah! I'll come back to it or hopefully it'll come back to me.

I 99% think I have Fibro, the way it affects me is the Trigger-points that are displayed in all the Anatomy Diagrams hurt when pressed in or pushed on, feeling like I am bruised in those same places in my body as in the Diagrams. I must check again but I don't think my sore-ness is in the specific exact location as the Anatomy Trigger-points you'd see in Body Diagrams of it online, but they all or mostly all would be in the same region/zone like, Glands, Neck, Shoulder-blades, and all further down, just not the exact specific marker on the Anatomy Diagrams but near-enough around there like.

I can't medically say if indeed Fibro is experienced in different ways, if my experience of whatever I have is 1 way for Fibro to present itself, if constant always-present pain is another variation of it, maybe it is I don't know. I feel bruised in certain parts of my body, it's nothing really serious in 1 way because it's not constant actual physical pain the way it presents for me. BUT, my worry is, because of the way it's happening to me, that, it will have long-term effects on my body and my body's wear-and-tear, and on my Immune-System. That's my worry really. Can cope with feeling bruised, it's slightly different than if I were all the time in physical pain I think? Well I think it is?!? I really don't know what's what anymore!!

But I definitely have something specific 'cos like a few parts of your body feeling like you're bruised when they are pressed-in or pushed on should be a specific enough incident for a Doctor to know what's wrong with me shouldn't it!! You'd imagine it would be something telling-enough for a medical person to know what's wrong with me 'cos it's such a specific indicator that my body is not working right!! It's so frustrating and annoying that for whatever reason I'm un-aware of, - it AIN'T specific enough for a Doctor to know or diagnose what's wrong with me!! :mad::( Even though it IS indicatory and it is a specific occurence/event! IT IS! Gahhhh am like a broken record going on about it at this stage!!

I don't even know what pain or sore-ness is really?!? What's the difference in pain and sore-ness?!? How does anyone know if they're in pain or if they're sore?!? What's the difference in the 2?!? Do I say I'm in pain or do I say I'm sore I don't know which I am or how do I tell 1 from the other?!? I don't know what to think!! I just don't know anymore!! Actually some Anatomy Diagrams of it have 11 Trigger-points and other Diagrams of it have 18 Points, don't know why that is, maybe it's just Researchers are better-informed and more au-fait with the illness as time goes on. And I could be wrong I will check this out later, but, if I'm not mistaken, the Trigger-point markers can be slightly different in several Body Diagrams of it.....

I keep meaning to go to a Fibromyalgia Meeting, I think there's a Group in my County and say I'm sore here, here, and here, and they'll hopefully all say oh I know exactly what you mean I'm sore there too!

I'm okay with only being middle-aged and having to live like a stooped-over elderly-lady always minding themselves and having to live a fragile life on a daily basis when I'm out and about so that people don't bump into me in case I experience this bruised feeling on some part of my body! But it means I'm always having to be minding my body, and it's stupid! It means I have to live in a robotic stance, afraid to move! 'Cos I'm afraid if some part of my shoulder is sore or if I turn my head too much or too far it'll set off soreness in another part of a Trigger-point further up on me or something! Always have to be minding myself now! There's a Saying about being wise for yer years. But I don't think it was supposed to be take this literally!! I don't want to be elderly just yet thanks!! But like I said, I guess the only way to look at it is, being in physical pain might be worse. I'm having awful trouble with my neck lately, it makes for very robotic dancing my way through the day to get through it hah!!

I see on a lot of Forums, some people that have been diagnosed with Fibro speak about Arthritis-like symptoms, and actually 1 Doctor has said to me that Fibro can be experienced in different ways, some suffer with it by way of stiffness when they get up in the mornings.

Having awful difficulty with Doctors trying to get anywhere with this myself at the moment, it's nightmarish. I kind-of heroically lol bullied my way into a G.P. (hard thing to do when ya need to get to the bottom of being sick but you've no physical proof and no-one will believe ya lol!!) that I randomly fortunately found out, that they diagnosed somebody with it, and I was so brave going into the Appointment to see them and stand my ground and everything! and they did say I was "suggestive of Fibromyalgia," but, that's neither here nor there!! :rolleyes::(:rolleyes: I was ecstatic on such a positive outcome but then I quickly realized it wasn't such a positive outcome at all, it was a say-something-to-shut-me-up-approach outcome lol. I thought I might be at long last at least going in some clear direction and get myself sorted out and finally have a Diagnosis, but instead their wait-and-see attitude they adopted is really a waste of time as it turns out "Suggestive of Fibromyalgia" is essentially nothing!! A whole big fat Sack of nothing!! A waste of time! Total vague-ness personnified like a Boss like!!

From your couple of sentences O.P., my personal reading-up of it thus far, - wouldn't lead me to Fibromyalgia in your case, but that's only a non-educated personal guess on my part! There's a whole host of other things that you havn't even touched on that wouldn't sway me towards Fibro for you. But a second opinion can only help anyways, it won't hurt pardon the pun lol. Fibro could mean being fatigued unable to get out of bed some day, could have Bowel problems another day, could be forgetful with horrendous Brain-Fog another day.

I remember reading someone's Blog who has Fibro and they mentionned their hand hurts when brushing their hair, I couldn't believe I found somebody else to say that it hurts to do such a simple daily task! I tend to feel like I constantly have Headphones on my head! If yer ever wearing a Head-set for a while, that 10-second-feeling ya get when ya take them off afterwards that feels like you're still wearing them but the feeling goes away again after a few seconds? - I feel like I always have Headphones on me! I noticed somebody else has described it as like when yer getting yer hair washed at the Salon! But I think I have it sussed now, that whatever the feeling is, that actually attributes some way to my brain-fogginess, it's kind-of headachy in a way but it's not really a Headache! But it accentuates being forgetful anyways, that much I reckon is true! But again, this is all my own personal experience of things, so take from it what you will.

Brain-fog aside, the 2 biggies would be Chronic Pain, and Chronic Fatigue, but it's a mixed bag of things too I find, along with Brain-fog, Bowel trouble, sleep and insomnia trouble, communication aspects, sensory stuff.... I remember seeing a load of Slides on it about Environmental contributors and Humidity and extreme cold were mentionned, and I firmly believe I'm allergic to Humidity! I hate it! What else.... I can't think now....

I have been to a handful of different Doctors to try make headways but havn't been successful. A few Hospital visits and Scans and Blood-tests etc. Tests, Scans etc. here and there over the last few years too but again no success. My physicality is all in order it seems. Heart, Lungs, Liver, Kidneys etc. all above-board lol and a-okay so there's nothing wrong with me on the outside! My neck is starting to become a serious hindrance now though trying to hold my head up! So it's starting to get a little serious now..

A couple of the telling factors for me were areas of soreness such as sore glands and Collar-bone. My Collar-bone currently and always has hurt like a mo-fo! A lot! And eventually then I started investigating further, and apparently, Glands and Groin area being sore is common-place for people with Fibromyalgia, and that's when things started clicking for me, with my Glands, and also finding Smear really painful too!

I went for an Ultrasound one time, and I reckon almost every place on my body that he pressed in on with his Scanner I said ow lol! It was as if he somehow knew where I'd be sore before he moved on to the next Body-part that he was checking! It was so amazing in a way 'cos the Ultrasound was so exacting of where on my body I was sore!! Yayyyyy at long long last this man can see very clearly FULL PROOF lol actual in-the-flesh proof lol, that I'm in pain!! Yayyyyy I'm gonna get my Diagnosis now. But my delight didn't last too long!! The Report stated there was nothing found! ;( ;( Hellishly heart-breaking! I was absolutely devastated!! So so close but so far!! Understandably, it was probably out of his hands, they wouldn't dream of going any further in terms of telling me anything about what they think or what might might be wrong, I guess I understand that, he only does what he's supposed to do in his role, scan me for whatever reason he's scanning me lol, he isn't getting paid to do anymore, and he likely wouldn't be up for doing any more outside of his remit in case he gets fired lol, so he just does his job, all that's required of him! and moves onto the next patient! Fair enough, he may genuinely not have found anything in terms of what his Job-Role is or my physical organs all being okay and functioning and in working order.

But it's the absolute pits to think that I left there crying in pain, he knew the source of the pain, I reckon he knew full-well what was wrong with me too, but he couldn't / wouldn't / wasn't allowed to do anything about it! Ooooh devastated doesn't even begin to describe it!! Ultrasound was the only one SUCCESSFUL lol thing that could clearly distinctly prove and accurately display where my pain source(s) originate from and Report said Nothing was found! :rolleyes: Ya can choose between laughing or crying!!! Or swearing!

He even went out of the Room before we finished-up to check his Write-up with a Senior and run it by them. I would dearly love to have been a fly on the wall for that conversation, and see did he mention anything about that the Exam he just carried out actually caused the Patient to be in pain!! :rolleyes: Wouldn't it have been so great if he cared enough or was paid enough or ballsy enough to call in somebody else into that Ultrasound Exam, tell them the story that I'm definitely obviously in obvious pain and between a couple of them come up with a plan or reason or get referred on or do something pro-active to get me seen by the appropriate Medical Personnel that I need to be seen by and get looked after and diagnosed etc. :rolleyes::( But no! He just did his job and no more! If he only had.... Taken the plunge... Gone one step further... Ooh if only he had... I could be diagnosed and be getting appropriate treatment etc. by now......

Anyway enough of the sorrow and sadness and misery for now! Just gotta keep motoring! Plough on and keep moving forward! So that's my experience of things! Have one more thing to talk about which is Lymph-nodes, but will leave it till another time. Hands are sore typing now!! Don't know if any of the above rings true with you or sounds familiar but that's my tale of woe! Hope it has been of some help and insightful!

Have just remembered, along with the Trigger-points in the Anatomy Diagrams, I recall it being said, that another Trigger-point, if ya go to press it in or push on it, - is the stretch-of-space running diagonally right below your Kneecap. On each Kneecap if ya touch the top and run outwards and down diagonally in an upside-down v-shape, - the diagonals just below the Kneecap are sore too, and I found this to be true.

Only for the Internet and Googling and research and investigating and all the reading-up I do I would be lost!! Doctors can sometimes seem or appear to be clueless!! It seriously is the Internet and Google that's aiding me in coming to my conclusive Diagnosis! Would be lost without the Internet!!

Have you ruled out Lyme's disease?