[Vicky.]

Originally Posted by DemolitionRed

From what I'm understanding Vicky, they are treating the symptoms without knowing the cause? Have they tried/attempted to give you a diagnosis of anything?

They aren't even treating the symptoms properly as the oramorph gives me a little bit of relief but only lasts like an hour, then I have to wait 3 hours for the next does (officially, as it happens I take it whenever necessary as its such a low dose I know I cannot OD on it and I would rather not be in pain when theres a way not to be, but this is how I end up with none for 3/4 days a week :S)

They originally diagnosed costocondritus. But then a specialist said that was a ridiculous diagnosis as the pain is in the wrong place to be that. Then they said it may be caused by gallstones, so took out my gallbladder and ****ed it up which left me in more pain than before as they had to open me back up to do a 'washout' and they had cut my bile duct too so I had to have huge drains out of my chest for 2 weeks which left me with new pain ontop of the old pain. Luckily the nerve damage caused by the drains is treated very effectively with the 600mg pregabin that they give me per day. I also since having gallbladder out, have had huge digestive issues and a very bad stomach ache on a regular basis. And feel sick near constantly, which is controlled by cyclizine pretty effectively, but not always.

And after this, nothing for 2 years. They did blood tests every so often which show inflammation but obviously..doesn't tell them where the inflammation is.

Recently they also tried a nerve block into my spine, which they called an 'intercostal muscle injection'...which was apparently meant to be a kind of long lasting anaesthetic if it worked. Which it did not, and left me again in more pain than before. 3 days after the injection I could not move at all and then after this I get random shooting pains up my spine. It did not relieve the pain at all..which was awful as I had been waiting for it for a year and looking forward to it as I had been lead to believe it was very very likely to be effective. I broke down in the GPs about this and they said that it was not likely to be effective, but it was done for diagnostic reasons so they can rule stuff out rather than expecting it to help me. So I was lied to, and again, what they tried to do left me worse off.

So yeah, pretty pathetic story so far. Everything they have tried to do to help me seems to have gone wrong (apparently them knacking up a keyhole gallbladder removal is really really rare, so just my luck they did mine wrong eh...) and what they are giving me to deal with the pain in the meantime does not even work properly.

[Cherie]

Originally Posted by Kizzy

Aw well good job there's nice big coal fed power stations to produce lots of nice 'clean' energy then eh?

AS a Mayor he has been pretty poor, not sure why he is taking issue with government approved woodburners which cost a fortune, targetting the middle class?

[Kizzy]

Originally Posted by Vicky.

They aren't even treating the symptoms properly as the oramorph gives me a little bit of relief but only lasts like an hour, then I have to wait 3 hours for the next does (officially, as it happens I take it whenever necessary as its such a low dose I know I cannot OD on it and I would rather not be in pain when theres a way not to be, but this is how I end up with none for 3/4 days a week :S)

They originally diagnosed costocondritus. But then a specialist said that was a ridiculous diagnosis as the pain is in the wrong place to be that. Then they said it may be caused by gallstones, so took out my gallbladder and ****ed it up which left me in more pain than before as they had to open me back up to do a 'washout' and they had cut my bile duct too so I had to have huge drains out of my chest for 2 weeks which left me with new pain ontop of the old pain. Luckily the nerve damage caused by the drains is treated very effectively with the 600mg pregabin that they give me per day. I also since having gallbladder out, have had huge digestive issues and a very bad stomach ache on a regular basis. And feel sick near constantly, which is controlled by cyclizine pretty effectively, but not always.

And after this, nothing for 2 years. They did blood tests every so often which show inflammation but obviously..doesn't tell them where the inflammation is.

Recently they also tried a nerve block into my spine, which they called an 'intercostal muscle injection'...which was apparently meant to be a kind of long lasting anaesthetic if it worked. Which it did not, and left me again in more pain than before. 3 days after the injection I could not move at all and then after this I get random shooting pains up my spine. It did not relieve the pain at all..which was awful as I had been waiting for it for a year and looking forward to it as I had been lead to believe it was very very likely to be effective. I broke down in the GPs about this and they said that it was not likely to be effective, but it was done for diagnostic reasons so they can rule stuff out rather than expecting it to help me. So I was lied to, and again, what they tried to do left me worse off.

So yeah, pretty pathetic story so far. Everything they have tried to do to help me seems to have gone wrong (apparently them knacking up a keyhole gallbladder removal is really really rare, so just my luck they did mine wrong eh...) and what they are giving me to deal with the pain in the meantime does not even work properly.

Did they ever wonder if it was dietary Vicky?

[Kizzy]

Originally Posted by Cherie

AS a Mayor he has been pretty poor, not sure why he is taking issue with government approved woodburners which cost a fortune, targetting the middle class?

Well as he came after bojo most were expecting good things, but to be fair this does smack of direct pressure from the big 6 and nothing else.

[Vicky.]

Originally Posted by Kizzy

Did they ever wonder if it was dietary Vicky?

Yeah they have had me make changes, also wondered if it was vitamin deficiencies at one stage and made me have some injection, think it was vitamin e but not sure.

What I think it is, is hormonal. but they refuse to look into it. The reason I think this, is I have had this pain for years and year but it used to just be once a month or so so I could deal with it then. During both my pregnancies, it went away completely. And after giving birth to my son, it has been constant pain. So..the only thing that makes sense to me is its something to do with hormones. But no, they know best and refuse to even test. Why they think they know best when they have failed to find the source so far, I don't know.

[Kizzy]

Originally Posted by Vicky.

Yeah they have had me make changes, also wondered if it was vitamin deficiencies at one stage and made me have some injection, think it was vitamin e but not sure.

What I think it is, is hormonal. but they refuse to look into it. The reason I think this, is I have had this pain for years and year but it used to just be once a month or so so I could deal with it then. During both my pregnancies, it went away completely. And after giving birth to my son, it has been constant pain. So..the only thing that makes sense to me is its something to do with hormones. But no, they know best and refuse to even test. Why they think they know best when they have failed to find the source so far, I don't know.

If that was the case wouldn't the answer be to just go on the full dose pill?

[Niamh.]

Originally Posted by Vicky.

Yeah they have had me make changes, also wondered if it was vitamin deficiencies at one stage and made me have some injection, think it was vitamin e but not sure.

What I think it is, is hormonal. but they refuse to look into it. The reason I think this, is I have had this pain for years and year but it used to just be once a month or so so I could deal with it then. During both my pregnancies, it went away completely. And after giving birth to my son, it has been constant pain. So..the only thing that makes sense to me is its something to do with hormones. But no, they know best and refuse to even test. Why they think they know best when they have failed to find the source so far, I don't know.

That's really odd about it going away during pregnancies Vicky, would hormones cause chest pains though? They really should investigate that angle though, like try and find something that changed during pregnancy that could have stopped the pain

[Vicky.]

Originally Posted by Kizzy

If that was the case wouldn't the answer be to just go on the full dose pill?

I have tried checking the hormonal stuff myself. I have been on both the pill, the mini pill, the injection and currently the implant. None of which has made any difference. Still think its hormonal in some way though, with it disappearing totally during pregnancy, and then going as bad as it is now right after giving birth

[Vicky.]

Originally Posted by Niamh.

That's really odd about it going away during pregnancies Vicky, would hormones cause chest pains though? They really should investigate that angle though, like try and find something that changed during pregnancy that could have stopped the pain

No idea. Its not chest pains as such, its a stabbing pain in the side of my ribs. Have more problems now after botched surgeries and such, but the original pain was a pain in the right side, like right down the side of the ribcage, sometimes going into my stomach area.

[Niamh.]

Originally Posted by Vicky.

No idea. Its not chest pains as such, its a stabbing pain in the side of my ribs. Have more problems now after botched surgeries and such, but the original pain was a pain in the right side, like right down the side of the ribcage, sometimes going into my stomach area.

sounds awful though, I can't believe they're not doing more to try and figure it out

[Kizzy]

Originally Posted by Vicky.

I have tried checking the hormonal stuff myself. I have been on both the pill, the mini pill, the injection and currently the implant. None of which has made any difference. Still think its hormonal in some way though, with it disappearing totally during pregnancy, and then going as bad as it is now right after giving birth

That is so odd, was it deffo the full pill they gave you? I would've thought with the way it worked kidding the bod it's preggers that would solve it. What was the vit E suggested for?

[Vicky.]

Originally Posted by Kizzy

That is so odd, was it deffo the full pill they gave you? I would've thought with the way it worked kidding the bod it's preggers that would solve it. What was the vit E suggested for?

I think it was, was just told it was the pill, then the minipill :S They don't know I am trying to find the source myself, I just keep telling them that I have reactions and stuff or don't trust the method any longer, and ask for the next one

Vitamin E was suggested as in my bloods it showed as severely aneamic and deficient in some vitamin, think it was E. They apparently had to order in the inection for that from germany, not sure on the reasons for that

[Kizzy]

Originally Posted by Vicky.

I think it was, was just told it was the pill, then the minipill :S They don't know I am trying to find the source myself, I just keep telling them that I have reactions and stuff or don't trust the method any longer, and ask for the next one

Vitamin E was suggested as in my bloods it showed as severely aneamic and deficient in some vitamin, think it was E. They apparently had to order in the inection for that from germany, not sure on the reasons for that

The mini pill works a different way, what were you on? Try get on yasmin if you can it's more expensive so they are more reluctant to prescribe it but it's good, if you're overweight or have high blood pressure they wont let you have it though.

Are you sure it wasn't A?
Have to go to work and on nights for a couple of days so if I don't answer not being rude, chat soon x

[Vicky.]

Originally Posted by Kizzy

The mini pill works a different way, what were you on? Try get on yasmin if you can it's more expensive so they are more reluctant to prescribe it but it's good, if you're overweight or have high blood pressure they wont let you have it though.

Are you sure it wasn't A?
Have to go to work and on nights for a couple of days so if I don't answer not being rude, chat soon x

It might have been A. Whatever it was had to be ordered in as apparently we don't stock it here

I am a bit overweight. Not massively so though.

Also sorry for hijacking your thread

[DemolitionRed]

Originally Posted by Vicky.

It might have been A. Whatever it was had to be ordered in as apparently we don't stock it here

I am a bit overweight. Not massively so though.

Also sorry for hijacking your thread

Sorry you're having to go through this but I honestly think you need to push your doctors to be more pro-active. GP's are basically ear nose and throat specialists who rely on specialists for anything more complex.

It used to be that you went to your GP, who sent you to a specialist, who went through a process of elimination before sending you on to a specialist in another field. Now what they do is send you back to your doctor, perhaps with a suggested referral, which the doctor often doesn't act upon... because money is tight.

I'd start by getting all your medical records. All you have to do is go into your surgery with id like a passport or driving license and fill in a form asking all your records to be sent to you. When you get them, scrutinize them to see what each specialist has said and what they recommend. Your GP's will of had meetings about you and you can see what was said/suggested at those meetings.

Next time you see your doctor, reel off the list of specialists you've seen and tests you've had and then ask, "So what's the next step? where do we go from here?"
By doing that your saying, "we are in this together and I'm sure you want a diagnosis for me as much as I do"

It may be that you have something very rare but its more likely your just haven't' seen the right specialist yet.

[Vicky.]

Originally Posted by DemolitionRed

Sorry you're having to go through this but I honestly think you need to push your doctors to be more pro-active. GP's are basically ear nose and throat specialists who rely on specialists for anything more complex.

It used to be that you went to your GP, who sent you to a specialist, who went through a process of elimination before sending you on to a specialist in another field. Now what they do is send you back to your doctor, perhaps with a suggested referral, which the doctor often doesn't act upon... because money is tight.

I'd start by getting all your medical records. All you have to do is go into your surgery with id like a passport or driving license and fill in a form asking all your records to be sent to you. When you get them, scrutinize them to see what each specialist has said and what they recommend. Your GP's will of had meetings about you and you can see what was said/suggested at those meetings.

Next time you see your doctor, reel off the list of specialists you've seen and tests you've had and then ask, "So what's the next step? where do we go from here?"
By doing that your saying, "we are in this together and I'm sure you want a diagnosis for me as much as I do"

It may be that you have something very rare but its more likely your just haven't' seen the right specialist yet.

I actually have all my medical notes due to the DWP deciding I no longer qualify for PIP. Judge whos doing my tribunal ordered them, and now that welfare rights have proof of what I was telling them, they say not only will I definitely get my award back, I will also be granted the higher level. Before I had the standard award.

I ask my GP all the time whats the next step..they always say its up to the pain clinic. Who wont give me a ****ing appointment

I actually think the problem might possibly be something called fibromyalgia. Having read up on it after someone on mumsnet said that sounded like my issue. Its basically, random unexplained pain..accompanied with fatigue and muscle aches. All of which suit me exactly.

Unfortunately,my GP says this is not a real illness Even though it is.

[AnnieK]

Originally Posted by Vicky.

I actually have all my medical notes due to the DWP deciding I no longer qualify for PIP. Judge whos doing my tribunal ordered them, and now that welfare rights have proof of what I was telling them, they say not only will I definitely get my award back, I will also be granted the higher level. Before I had the standard award.

I ask my GP all the time whats the next step..they always say its up to the pain clinic. Who wont give me a ****ing appointment

I actually think the problem might possibly be something called fibromyalgia. Having read up on it after someone on mumsnet said that sounded like my issue. Its basically, random unexplained pain..accompanied with fatigue and muscle aches. All of which suit me exactly.

Unfortunately,my GP says this is not a real illness Even though it is.

Fibromyalgia is definitely a real illness. I have a friend who suffers with it and at her worst, she actually has considered suicide a few tines as the pain is that chronic. She has recently overhauled her diet which has helped a bit but she now eats virtually a vegan diet and says its so boring, she also has b12 injections, anti inflammatories and trammies (although she says they're ****). She also has regular reflexology but doesnt think that helps. Took her years to be told thats what she had.....kept getting fobbed off as wasting docs time though. Hope you get it sorted Vic

[Vicky.]

B12, thats the injection I got!

Made no difference with the one, but I was meant to have another to be sure and the docs decided it was a waste as the first made no difference?! Despite saying before I got the first that a second would be needed to see results.

I know fibro is very real. A friend has had it for a while and I never thought anymore into it until I started checking my symptoms. They reckon its what I have too as its nearly identical. Only thing I don't have thats apparently a requirement, it aching joints.

I can;t help thinking though that it HAS to be hormonal with it going away in pregnancies. Also it started with just the pain and has progressed since then, where apparently fibro starts with all of the symptoms.

[Cherie]

Originally Posted by Kizzy

Well as he came after bojo most were expecting good things, but to be fair this does smack of direct pressure from the big 6 and nothing else.

Why would he need to cave to pressure from the Utility companies?

[Cherie]

Originally Posted by Vicky.

B12, thats the injection I got!

Made no difference with the one, but I was meant to have another to be sure and the docs decided it was a waste as the first made no difference?! Despite saying before I got the first that a second would be needed to see results.

I know fibro is very real. A friend has had it for a while and I never thought anymore into it until I started checking my symptoms. They reckon its what I have too as its nearly identical. Only thing I don't have thats apparently a requirement, it aching joints.

I can;t help thinking though that it HAS to be hormonal with it going away in pregnancies. Also it started with just the pain and has progressed since then, where apparently fibro starts with all of the symptoms.

A friend of mine has Fibro, so it is a recognised complaint not sure why you have been told otherwise! think Parminion recently said his Mrs has it as well

[Vicky.]

Originally Posted by Cherie

A friend of mine has Fibro, so it is a recognised complaint not sure why you have been told otherwise! think Parminion recently said his Mrs has it as well

Apparently a lot of doctors don't believe its a real illness. 2 of the ones at my surgery don't, from experience of bringing it up

[Kizzy]

Originally Posted by Vicky.

It might have been A. Whatever it was had to be ordered in as apparently we don't stock it here

I am a bit overweight. Not massively so though.

Also sorry for hijacking your thread

Ask at reception for a copy of your last bloods tell them you need to take to a hospital appointment it will have the levels and whether they are high or low on it.
I'd ask about yasmin, no worries about the thread

[Kizzy]

Originally Posted by Cherie

Why would he need to cave to pressure from the Utility companies?

To force more back from their woodburners to cranking up the thermostat of the central heating.
no profits no kickbacks

[Cherie]

Originally Posted by Kizzy

To force more back from their woodburners to cranking up the thermostat of the central heating.
no profits no kickbacks

I understand why the utilise would want less wood burners, my question is why would the London Mayor be influenced by them in his decision making? So you are saying he is selling out the people who voted for him for kickbacks to the Mayors office?

[DemolitionRed]

Originally Posted by Vicky.

I actually have all my medical notes due to the DWP deciding I no longer qualify for PIP. Judge whos doing my tribunal ordered them, and now that welfare rights have proof of what I was telling them, they say not only will I definitely get my award back, I will also be granted the higher level. Before I had the standard award.

I ask my GP all the time whats the next step..they always say its up to the pain clinic. Who wont give me a ****ing appointment

I actually think the problem might possibly be something called fibromyalgia. Having read up on it after someone on mumsnet said that sounded like my issue. Its basically, random unexplained pain..accompanied with fatigue and muscle aches. All of which suit me exactly.

Unfortunately,my GP says this is not a real illness Even though it is.

Like others have said, Fibromyalgia is real but Fibromyalgia is a Latin word for 'muscle pain' and muscle pain can be many different illnesses. My sister was relieved when she was eventually told she had Fibromyalgia. The problem was, every time she went to the doctors with new symptoms they missed diagnosing her with a much more serious condition called 'spontaneous coronary artery dissection' a condition where the artery wall tears (SCAD is a rare condition btw that needs very specific tests). She'd already been diagnosed with hypermobility which people FM often have but hypermobility is also a pre-curser for other conditions, including SCAD. All the time she believed she had FM, she was attending pain clinics, changing her meds, upping her meds and having days when she couldn't get out of bed. She's now fully off painkillers and back to being fully mobile because she's taking the right meds for her now diagnosed condition.

I would caution on accepting a diagnosis of FM until you've had further tests for other things because once you get that diagnosis, all your going to get is pain management and doctors not taking you with the seriousness you deserve.