Diagnosis without further investigation.

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Diagnosis without further investigation.

Postby Kayleigh » Thu Apr 02, 2015 7:44 pm

I was diagnosed about 6 years ago after 4 years of complaining to my GP, I was told this after being in the hospital for 5 minutes. They did not offer me help or explain what it was so I went on for a couple of years in agony and taking co-codemol.
I was struggling so bad in work and having a lot of time off last year (10 years pain at this point) that my work paid for me to go private and low and behold they are now trying to help me even though I only paid private twice, one rheumatologist and one neurologist. Since then I have had brain scans, nerve tests, needles put into my muscles to test the messages that are being sent and last month a muscle biopsy. This is all within 11 months.The doctors are baffled by what's happening. I personally believe I have ME. There is very little difference between the 2. The main differences are people with ME get a lot of sore throats and this is not connected to fibro. A lot of viral infections are had by ME patients which I have at least one every 3 months and the pain starts after the muscle fatigue. Otherwise it is pretty much the same condition. Some doctors even say it was if there was a trauma or bad viral infection before it started that can determine which one you have.

Although I have babbled on a bit sorry, what I'm trying to say is don't just accept this diagnosis, push for tests and make sure every other avenue has been covered. The rheumatologist I saw told me a lot of doctors will say Fibro because they haven't got to do all the tests or even understand the condition. Fibro is a genuine disease but it's not understood so how can they tell us just by pushing on pressure points.
I have now had all the tests I can and although it has made me worse on times and the depression kicks in a lot I will finally have a final answer in May. If it is fibro I will finally be able to accept it knowing everything has been covered.
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Re: Diagnosis without further investigation.

Postby iblinkin » Thu Apr 02, 2015 8:37 pm

Hi Kayleigh, it's not fun dealing with this illness is it? I have fibro and i did get a lot of sore throats and respiratory infections until i started taking Vitamin D drops and now it has been reduced to occasionally.

You may want to consider your diet as there's tons of info on the net, also look up magnesium for fibro as our minerals get depleted quite easily as it helps with memory and spasms.

Cheers!
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Re: Diagnosis without further investigation.

Postby Kayleigh » Thu Apr 02, 2015 8:45 pm

Thank you for the advice.

No its not fun at all and I'm so fed up of trying to explain to people what's going on with me. I'm pretty sure it's one of the two, don't think there will be a different outcome but I needed that 100 percent this is what you got, you know what I mean.
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Re: Diagnosis without further investigation.

Postby carolad » Thu Apr 02, 2015 11:09 pm

I think the uncertainty is difficult to deal with so I can understand you wanting to get a proper answer. I still have doubts about my fibro diagnosis and I don't suppose I'll ever know for sure. I hate that but I know I just have to accept that whatever the cause, I have pain and fatigue and I just have to learn to live with it!

I hope you get a proper diagnosis soon x
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Re: Diagnosis without further investigation.

Postby Kayleigh » Fri Apr 03, 2015 7:32 am

Thank you
To be honest I was just living with it. Every other illness that occurred I put down to fibro and just got on with it. I only started pushing for further tests when occupational health nurses and doctors from work said for me to do so. Now I'm really glad I did.
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Re: Diagnosis without further investigation.

Postby Jeany » Fri Apr 03, 2015 8:32 am

Very interesting Kaliegh thank you for sharing that info with us, and please let us know the out come and any advice would be gratefully received.

I was diagnosed with ME and fibro 4 yrs ago after years of going back and forth to my GP with different ailments,which followed having the Glandular Fever virus at the age of 47.

I have the pain from head to toe, and the sore throat & glands, and a huge amount of stomach problems which they cannot seem to cure even after 10 yrs of tests.

I have always had really bad anxiety, panic attacks and agorophobia at intervals.

I wonder too if I have been wrongly diagnosed, and I am fed up now of feeling like a 90 year old when prior to the illness, I looked brill for my age and was very fit and walked 40 miles a week.

I wish you all the best and look forward to your updates in May.

Jeany
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Re: Diagnosis without further investigation.

Postby *Lisa* » Fri Apr 03, 2015 11:17 am

I agree! but you also have to take into consideration that in some cases alot of other illnesses that mimick that of fibro dont rear there head until many years down the line so in some cases fibro is the first diagnoses as nothing else is yet showing. Which why i always encourage members to get new symptoms checked out.

I maybe one of those people!

First of my symptoms 16 years back now was pain and stiffness in the neck and fatigue plus TMJ. GP refered me back and forth to a physio. She was great always managed to release the tension after so many sessions and i was discharged but only to come back time and time again!

She (physio) after the 4th time of referal noticed the stiffness was spreading and not getting better so called my GP and mentioned fibro. He then got me in to see a Rheumatologist. The Rhuemi went along with this possible diagnoses but happen to mention i didnt have the amount of tender points but symptoms seem to be that of fibro. I was given a leaflet some amitriptylines and discharged!

Meds never helped only agrivated my mental state so i started paying for private physio as this was the only main thing that helped and as i now had a fibro diagnoses i wasnt allowed any more NHS physio as they cannot fund people they cannot cure!!

I started to get worse as time went by, got desperate and paid for a private Rheumi. Again he just listened, never sent me for tests, felt the tender points, again mentioned i didnt have many, gave me some tablets which were more powerful that GP can prescribe and sent me away.

So... as the years went by the pain and stiffness spread down wards so now im covered! i get repeated muscle strains from the stiffness that are dibilitating which were looked over. I was getting numbness and all sorts of weird symptoms. My CRP (inflammation) levels were high yet everytime i saw my GP i got ""Its fibro"" so i dodnt bother going to see GP and got on with it knowing it would be the fibro.

I never ever had any tests in 14 years only bloods which would always show up inflammation but GP dismissed this as "its you" :?: :crazy:

Then he retired! :mrgreen: I had to go and see a new GP as my leg was weak and numb and was getting sciatica. This GP sent me for MRI of the lumber spine and it was there they see that my lower spine was curved inwards, i had degeneration and a bulging disc!

Then not long after the DLA turned my care allowence down and so i appealed. This was also turned down so i asked for the copy of the doctors report.

A registrar had filled it in giving them a 2006 consultant letter!!! (was 2013) and said that the chronic fatigue syndrome wasn't down as a diagnoses! so i called a partner of the practice and he decided (as he didnt know me) to send me back to the consultant for a CFS diagnoses.

I saw a registrar she was really nice, listened and wrote everything down then she called in the consultant. He arrived with 2 trainees and registrar started to say what was goings on. They all listened. Consultant challenged me well on why i needed care!!! as he couldnt believe that CFS etc was really that bad :-? he wanted to know how many days/hours etc i needed care. To this i expained that i dont know! as each day differs and may need help more one day then the next to which these trainees all nodded! :-| :lol:

Anyways he stood me up and pressed all the tender points and went yes write down CFS and FM!! :roll:

Then he says (as im getting up to leave) " I suppose i had better run bloods "

2 weeks later he wrote to me saying my inflammation levels were too high :facepalm: :swear1: errm yep they have been for many years!! and i needed to go back and see him.

Well after 10 years of being told my bloods were "just me" i thought i would hear the same and be in and out in no time ... waste of time... :roll: but i went anyways as i wanted to ask for some muscle relaxants for these strains and stiffness.

Well i was in there for an hour! had a complete thorough examination and to cut a long story short (well this part of it lol) he now thinks i have Ankylosing Spondylitis!!!!!!! so iv had x/rays MRI's and been told he will do further more tests and things when i see him in a few weeks.

So im in limbo land, do i have fibro? do i have both? is it something else? :crazy: :crazy: :crazy: :crazy: iv been living with fibro, made friends, modded forums, helped people yet now my life may take a huge turn! learning a new illness, new people and so forth :yikes:

I should have looked for a second opinion but you trust your doctors and believe what they say, i never once thought any different.

So yes always ask for tests, seek second opinions until you are satisfied
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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Re: Diagnosis without further investigation.

Postby carolad » Fri Apr 03, 2015 10:44 pm

*Lisa* wrote:I agree! but you also have to take into consideration that in some cases alot of other illnesses that mimick that of fibro dont rear there head until many years down the line so in some cases fibro is the first diagnoses as nothing else is yet showing. Which why i always encourage members to get new symptoms checked out.

I maybe one of those people!

First of my symptoms 16 years back now was pain and stiffness in the neck and fatigue plus TMJ. GP refered me back and forth to a physio. She was great always managed to release the tension after so many sessions and i was discharged but only to come back time and time again!

She (physio) after the 4th time of referal noticed the stiffness was spreading and not getting better so called my GP and mentioned fibro. He then got me in to see a Rheumatologist. The Rhuemi went along with this possible diagnoses but happen to mention i didnt have the amount of tender points but symptoms seem to be that of fibro. I was given a leaflet some amitriptylines and discharged!

Meds never helped only agrivated my mental state so i started paying for private physio as this was the only main thing that helped and as i now had a fibro diagnoses i wasnt allowed any more NHS physio as they cannot fund people they cannot cure!!

I started to get worse as time went by, got desperate and paid for a private Rheumi. Again he just listened, never sent me for tests, felt the tender points, again mentioned i didnt have many, gave me some tablets which were more powerful that GP can prescribe and sent me away.

So... as the years went by the pain and stiffness spread down wards so now im covered! i get repeated muscle strains from the stiffness that are dibilitating which were looked over. I was getting numbness and all sorts of weird symptoms. My CRP (inflammation) levels were high yet everytime i saw my GP i got ""Its fibro"" so i dodnt bother going to see GP and got on with it knowing it would be the fibro.

I never ever had any tests in 14 years only bloods which would always show up inflammation but GP dismissed this as "its you" :?: :crazy:

Then he retired! :mrgreen: I had to go and see a new GP as my leg was weak and numb and was getting sciatica. This GP sent me for MRI of the lumber spine and it was there they see that my lower spine was curved inwards, i had degeneration and a bulging disc!

Then not long after the DLA turned my care allowence down and so i appealed. This was also turned down so i asked for the copy of the doctors report.

A registrar had filled it in giving them a 2006 consultant letter!!! (was 2013) and said that the chronic fatigue syndrome wasn't down as a diagnoses! so i called a partner of the practice and he decided (as he didnt know me) to send me back to the consultant for a CFS diagnoses.

I saw a registrar she was really nice, listened and wrote everything down then she called in the consultant. He arrived with 2 trainees and registrar started to say what was goings on. They all listened. Consultant challenged me well on why i needed care!!! as he couldnt believe that CFS etc was really that bad :-? he wanted to know how many days/hours etc i needed care. To this i expained that i dont know! as each day differs and may need help more one day then the next to which these trainees all nodded! :-| :lol:

Anyways he stood me up and pressed all the tender points and went yes write down CFS and FM!! :roll:

Then he says (as im getting up to leave) " I suppose i had better run bloods "

2 weeks later he wrote to me saying my inflammation levels were too high :facepalm: :swear1: errm yep they have been for many years!! and i needed to go back and see him.

Well after 10 years of being told my bloods were "just me" i thought i would hear the same and be in and out in no time ... waste of time... :roll: but i went anyways as i wanted to ask for some muscle relaxants for these strains and stiffness.

Well i was in there for an hour! had a complete thorough examination and to cut a long story short (well this part of it lol) he now thinks i have Ankylosing Spondylitis!!!!!!! so iv had x/rays MRI's and been told he will do further more tests and things when i see him in a few weeks.

So im in limbo land, do i have fibro? do i have both? is it something else? :crazy: :crazy: :crazy: :crazy: iv been living with fibro, made friends, modded forums, helped people yet now my life may take a huge turn! learning a new illness, new people and so forth :yikes:

I should have looked for a second opinion but you trust your doctors and believe what they say, i never once thought any different.

So yes always ask for tests, seek second opinions until you are satisfied


That is terrible Lisa! Though it really doesn't surprise me :cry: I've seen so many incompetent and useless doctors over the past 10 or so years that I really don't trust them at all now. I avoid going to my GP at all costs (apart from to pick up prescriptions) and just try to manage my problems myself.

I think fibromyalgia is an 'easy' diagnosis for doctors. I do wonder if it is a case of them not knowing what is wrong with us so they just give us this label to shut us up :roll:

I hope you can get confirmation soon about whether you have AS x
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Re: Diagnosis without further investigation.

Postby Kayleigh » Sat Apr 04, 2015 3:41 pm

*Lisa* wrote:I agree! but you also have to take into consideration that in some cases alot of other illnesses that mimick that of fibro dont rear there head until many years down the line so in some cases fibro is the first diagnoses as nothing else is yet showing. Which why i always encourage members to get new symptoms checked out.

I maybe one of those people!

First of my symptoms 16 years back now was pain and stiffness in the neck and fatigue plus TMJ. GP refered me back and forth to a physio. She was great always managed to release the tension after so many sessions and i was discharged but only to come back time and time again!

She (physio) after the 4th time of referal noticed the stiffness was spreading and not getting better so called my GP and mentioned fibro. He then got me in to see a Rheumatologist. The Rhuemi went along with this possible diagnoses but happen to mention i didnt have the amount of tender points but symptoms seem to be that of fibro. I was given a leaflet some amitriptylines and discharged!

Meds never helped only agrivated my mental state so i started paying for private physio as this was the only main thing that helped and as i now had a fibro diagnoses i wasnt allowed any more NHS physio as they cannot fund people they cannot cure!!

I started to get worse as time went by, got desperate and paid for a private Rheumi. Again he just listened, never sent me for tests, felt the tender points, again mentioned i didnt have many, gave me some tablets which were more powerful that GP can prescribe and sent me away.

So... as the years went by the pain and stiffness spread down wards so now im covered! i get repeated muscle strains from the stiffness that are dibilitating which were looked over. I was getting numbness and all sorts of weird symptoms. My CRP (inflammation) levels were high yet everytime i saw my GP i got ""Its fibro"" so i dodnt bother going to see GP and got on with it knowing it would be the fibro.

I never ever had any tests in 14 years only bloods which would always show up inflammation but GP dismissed this as "its you" :?: :crazy:

Then he retired! :mrgreen: I had to go and see a new GP as my leg was weak and numb and was getting sciatica. This GP sent me for MRI of the lumber spine and it was there they see that my lower spine was curved inwards, i had degeneration and a bulging disc!

Then not long after the DLA turned my care allowence down and so i appealed. This was also turned down so i asked for the copy of the doctors report.

A registrar had filled it in giving them a 2006 consultant letter!!! (was 2013) and said that the chronic fatigue syndrome wasn't down as a diagnoses! so i called a partner of the practice and he decided (as he didnt know me) to send me back to the consultant for a CFS diagnoses.

I saw a registrar she was really nice, listened and wrote everything down then she called in the consultant. He arrived with 2 trainees and registrar started to say what was goings on. They all listened. Consultant challenged me well on why i needed care!!! as he couldnt believe that CFS etc was really that bad :-? he wanted to know how many days/hours etc i needed care. To this i expained that i dont know! as each day differs and may need help more one day then the next to which these trainees all nodded! :-| :lol:

Anyways he stood me up and pressed all the tender points and went yes write down CFS and FM!! :roll:

Then he says (as im getting up to leave) " I suppose i had better run bloods "

2 weeks later he wrote to me saying my inflammation levels were too high :facepalm: :swear1: errm yep they have been for many years!! and i needed to go back and see him.

Well after 10 years of being told my bloods were "just me" i thought i would hear the same and be in and out in no time ... waste of time... :roll: but i went anyways as i wanted to ask for some muscle relaxants for these strains and stiffness.

Well i was in there for an hour! had a complete thorough examination and to cut a long story short (well this part of it lol) he now thinks i have Ankylosing Spondylitis!!!!!!! so iv had x/rays MRI's and been told he will do further more tests and things when i see him in a few weeks.

So im in limbo land, do i have fibro? do i have both? is it something else? :crazy: :crazy: :crazy: :crazy: iv been living with fibro, made friends, modded forums, helped people yet now my life may take a huge turn! learning a new illness, new people and so forth :yikes:

I should have looked for a second opinion but you trust your doctors and believe what they say, i never once thought any different.

So yes always ask for tests, seek second opinions until you are satisfied




My first diagnosis was ankylosin spondylitis, 5 years later it was fibro. Last year they checked my original mri and said it was perfectly fine. I was told like you I had a curfiture of the spine and some bones were crumbling.
its reasons like this none of us should ever give up until all possible tests have been run. Why do Doctors think it is ok to dismiss us. I genuinely don't think they understand how we feel and how they treat us can make us feel. I will not give up hoping they can help us.
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