I posted a while ago thinking I may have CFS. I went to my GP and he seemed to take it seriously and referred me for blood tests for anaemia, thyroid function, protein levels, diabetes, etc, and, as I guessed they would, they all came back clear.
So, I went back today to discuss where to go from here. Cut a long story short, he basically said I do have CFS, but he won't diagnose it as 'there is no test' for it. I pointed out that in the info he gave me, it clearly states that if a patient has symptoms and other causes have been ruled out, then a diagnosis of CFS should be made. I have LOADS of symptoms and also risk factors, and this is seriously affecting my life. I have to put most of my energy into my degree and part-time job, and am too tired most of the time to have much of a social life; I will force myself to do things, but dread them as I know it will leave me feeling tired.
He unhelpfully said that 'the only treatment is exercise', even though exercise leaves me utterly exhausted and feeling physically ill (everything aches, I feel sick and faint, can't breathe, etc). He said I 'just need to build up to it': I've tried before though and never get past the sickness, faintness, total exhaustion etc. I'm also so tired that I simply don't have the energy to attempt and persevere with this at the moment, though I do make sure I have a brisk walk each day, and my job is fairly physical too.
I've just started my final year at uni and they're very strict now about missing seminars etc: any missed seminars MUST be backed up with a medical certificate. I mentioned this and he said 'well, all I'll tell them is that you're tired'. I KNOW what being tired is like, and this is totally different; it is complete and utter exhaustion, it is sleeping 12 hours at a stretch and not being refreshed, it is being physically exhausted, it is losing my memory, getting my words muddled, etc etc. I NEED a diagnosis, and he's basically said I have CFS, so why the refusal to make it official? Maybe he thinks I'm making it up, who knows?
I'm so frustrated, it's like the endomteriosis battle all over again. I'm terrified that my work will suffer at university and I have nothing to explain why; I'm terrified I'll sleep through my alarm one morning (as I frequently do) and miss a seminar, and end up in serious trouble. This whole thing is so depressing, I feel like no-one takes me seriously and thinks I'm making a mountain out of a molehill, and that's just not me at all.
I think I'm going to have to go private, but I don't know if anyone will see me without a referral. I'm seeing another GP on Wednesday and will see what they say, but in my practice they tend to stick together, plus my GP is the prcatice head, so I can't see this other GP going against what he's said.
Does anyone have any advice? Does anyone have this condition or know of any specialists in it? I feel I'm so close, and yet so far. I know there's no cure as such, but there are treatments available, and like with the endo, I just want an official diagnosis so people don't just think I'm getting all het-up about a little bit of tiredness...
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Update on me re Chronic Fatigue Syndrome (not good)
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Well, you are obviously not suffering from a little bit of tiredness! You're right to see another doctor. Hopefully, he/she should listen to you and give you an diagnosis. Your current GP doesn't sound like the best doctor in the world. I'm not an expert on Chronic Fatique Syndrome, but my guess is some people have actually been diagnosed with the condition, so you should be, too. If all else fails, going private would be the best option. It'll cost money, but your university course is of utmost importance.
I think you need to keep talking to more doctors or health professionals until you find someone who is more clued up on CFS and will support you by providing a diagnosis and more detailed guidance, referrals for treatment. I don't know a huge amount about CFS, I'm an OT student so have come across it, but I know there are things you can do. Cognitive Behavioural Therapy is also recommended as being useful for this syndrome.
I really feel for you. A lovely girl I used to play in a quartet with has CFS and it just seemed so limiting. She had found a very supportive gp and a group of other people living with CFS, and this seemed to be really helping her.
It may take some time and effort but I really think it would be worthwhile for you to keep looking until you find this support, you shouldn't have to deal with this alone. Don't lose heart either - there are more things you can do for CFS.
I really feel for you. A lovely girl I used to play in a quartet with has CFS and it just seemed so limiting. She had found a very supportive gp and a group of other people living with CFS, and this seemed to be really helping her.
It may take some time and effort but I really think it would be worthwhile for you to keep looking until you find this support, you shouldn't have to deal with this alone. Don't lose heart either - there are more things you can do for CFS.
<font color="#333333"><strong>________________________________<br /></strong></font><strong><br /><br />hence, the potato thus looks like a penis.<br /><br />Posted by </strong><strong>satsumakitten <
Hello!
I know your pain regarding CFS, I've had it since I was 16 and while I'm almost fully recovered now (at the age of 27) it is still hard. If your GP is not diagnosing you and not being helpful, you have to find one that is. Whereabouts in the country are you? You have to find a Dr (and it should be too hard) that will recognise this and send a letter to your department explaining you have an illness and that might mean missed seminars, problems with handing things in on time, etc. If it helps I had CFS and managed to get through GCSE's, A-Levels, a degree and a masters, so it can be done.
You might want to contact some charities or support groups like AYME or Action for ME, they might be able to give you info on Dr's that will be sympathetic. As for the advice your dr told you about exercise, from my experience that is complete rubbish. Exercise is not the answer for CFS. Once you have started recovering, doing little bits to build up your tolerance is good, but right now that should not be your treatment plan. The best advice a doctor ever gave me was to listen to my body and to use pacing. Pacing is a way of thinking of your energy like a budget, you only have so much and you use it on the most important things (uni, etc) and everything else you have to just say it isn't possible rather than pushing yourself to do it.
I know that may feel depressing that you won't be able to have a life. But CFS is an illness that most people recover from (at least to a degree) and it gets easier as you manage the illness. Oh and don't let Dr's push you around or tell you it's all in your head. I'd also recommend going to your department head/tutor and explaining about your illness and the problem with the dr. It might seem scary or something you don't want to do. But I've always found that if you are open and honest about everything people are understanding. You will get through the degree. It won't be easy and it might take a little longer than you want. Perhaps if you are finding it difficult, you could do the final year part time for health reasons?
I was very determined to get where I am, but having people support you (friends, family, boyfriend) is very important too. You might have to reevaluate your current expectations, and normal socialising might not be possible. Explain to your friends, let them support you and suggest social activities are not tiring. I spent a lot of time at uni having DVD nights and wine with my friends
) You can have a social life, and do uni, you just have to modify things.
If you aren't careful and listen to your body and look after yourself the illness is likely to get worse. Good luck and if you want to talk just message me)
I know your pain regarding CFS, I've had it since I was 16 and while I'm almost fully recovered now (at the age of 27) it is still hard. If your GP is not diagnosing you and not being helpful, you have to find one that is. Whereabouts in the country are you? You have to find a Dr (and it should be too hard) that will recognise this and send a letter to your department explaining you have an illness and that might mean missed seminars, problems with handing things in on time, etc. If it helps I had CFS and managed to get through GCSE's, A-Levels, a degree and a masters, so it can be done.
You might want to contact some charities or support groups like AYME or Action for ME, they might be able to give you info on Dr's that will be sympathetic. As for the advice your dr told you about exercise, from my experience that is complete rubbish. Exercise is not the answer for CFS. Once you have started recovering, doing little bits to build up your tolerance is good, but right now that should not be your treatment plan. The best advice a doctor ever gave me was to listen to my body and to use pacing. Pacing is a way of thinking of your energy like a budget, you only have so much and you use it on the most important things (uni, etc) and everything else you have to just say it isn't possible rather than pushing yourself to do it.
I know that may feel depressing that you won't be able to have a life. But CFS is an illness that most people recover from (at least to a degree) and it gets easier as you manage the illness. Oh and don't let Dr's push you around or tell you it's all in your head. I'd also recommend going to your department head/tutor and explaining about your illness and the problem with the dr. It might seem scary or something you don't want to do. But I've always found that if you are open and honest about everything people are understanding. You will get through the degree. It won't be easy and it might take a little longer than you want. Perhaps if you are finding it difficult, you could do the final year part time for health reasons?
I was very determined to get where I am, but having people support you (friends, family, boyfriend) is very important too. You might have to reevaluate your current expectations, and normal socialising might not be possible. Explain to your friends, let them support you and suggest social activities are not tiring. I spent a lot of time at uni having DVD nights and wine with my friends
) You can have a social life, and do uni, you just have to modify things. If you aren't careful and listen to your body and look after yourself the illness is likely to get worse. Good luck and if you want to talk just message me
)
In Response to Update on me re Chronic Fatigue Syndrome (not good) http://www.handbag.com/social/forums-health_health_update-re-chronic-fatigue-syndrome-not-good?plckFindPostKey=Cat:HealthForum:39Discussion:e5aa3eef-889a-4f71-ac6d-7559e35be57ePost:0ad0d0de-296a-42d4-b50b-6d22cdf794db :
Hi there,
I have a similar health problem- Fibromyalgia. Like you, I've struggled at university and to hold down a job. My first piece of advice would be to get in contact with the Disability Support Unit or equivalent at your university. They don't just help students with hearing/sight impairment or students with mobility problems. They *do* support students with other health problems as well.
They may be able to help you to access funds, equipment or just speak to your department and basically be on your side when comes to your studies.
I would also suggest that you ask one of the GPs at your practice about fibromyalgia as your symptoms correlate with that of fibromyalgia. There is a test for this condition and it is as simple as testing your sensitivity to pressure points on your body.
I know what it's like for people to think, "tiredness is normal" and "she looks ok". It can be really isolating! If you decide to contact your uni DSU, let me know how you get on!
Emily
Posted by barbie86[/quote]
Hi there,
I have a similar health problem- Fibromyalgia. Like you, I've struggled at university and to hold down a job. My first piece of advice would be to get in contact with the Disability Support Unit or equivalent at your university. They don't just help students with hearing/sight impairment or students with mobility problems. They *do* support students with other health problems as well.
They may be able to help you to access funds, equipment or just speak to your department and basically be on your side when comes to your studies.
I would also suggest that you ask one of the GPs at your practice about fibromyalgia as your symptoms correlate with that of fibromyalgia. There is a test for this condition and it is as simple as testing your sensitivity to pressure points on your body.
I know what it's like for people to think, "tiredness is normal" and "she looks ok". It can be really isolating! If you decide to contact your uni DSU, let me know how you get on!
Emily
Posted by barbie86[/quote]
I was diagnosed with CFS and Fibromyalgia 2 years ago. I have two small children and know how disabling the condition can be. It is really important to get the right diagnosis and if your GP is not supporting you then please get a second opinion.
I am currently on a CFS 10 week programme run by my local NHS trust. We are covering topics like Pacing , Cognitive Behavioural Therapy and relaxation techniques. I have to say I am finding it useful but more helpful is the fact that someone is validating that there is a reason why I am constantly tired with aching joints !
Good luck on your journey, my CFS has improved with time and for most people that it is true. I hope you feel more positive soon.
I am currently on a CFS 10 week programme run by my local NHS trust. We are covering topics like Pacing , Cognitive Behavioural Therapy and relaxation techniques. I have to say I am finding it useful but more helpful is the fact that someone is validating that there is a reason why I am constantly tired with aching joints !
Good luck on your journey, my CFS has improved with time and for most people that it is true. I hope you feel more positive soon.
Hello again,
I completely forgot that I got help from the disability services. In fact I was able to get a free assessment of my needs through the university and I got a computer (writing was too difficult), with special software so I could do work at home rather than have to go to the uni computers (I did engineering then changed to physics), and an ergonomic keyboard (I love them so much), and gave me software so I could learn to touchtype which helped a lot, and they wanted to give me a chair that was ergonomic and comfortable, etc. They might be able to help you in a similar way.
Definitely contact them, they might be able to arrange someone to come in and take notes for you if you can't make class or a seminar etc. I also had a wheelchair arranged for me for a field trip as I found walking very difficult. I had some odd looks at the power plant :oD but it was worth it to be able to go on the trip anyway.
Good luck!
I completely forgot that I got help from the disability services. In fact I was able to get a free assessment of my needs through the university and I got a computer (writing was too difficult), with special software so I could do work at home rather than have to go to the uni computers (I did engineering then changed to physics), and an ergonomic keyboard (I love them so much), and gave me software so I could learn to touchtype which helped a lot, and they wanted to give me a chair that was ergonomic and comfortable, etc. They might be able to help you in a similar way.
Definitely contact them, they might be able to arrange someone to come in and take notes for you if you can't make class or a seminar etc. I also had a wheelchair arranged for me for a field trip as I found walking very difficult. I had some odd looks at the power plant :oD but it was worth it to be able to go on the trip anyway.
Good luck!
I cured my CFS that i had from 14 through till 30, by giving up dairy and sticking to a strict low carb diet.
You get results very quickly, so it might be worth a try for 10 days, and see how your energy levels are x
You get results very quickly, so it might be worth a try for 10 days, and see how your energy levels are x
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Hi Barbie86, sorry to hear you're not feeling so great- my boyfriend is a doctor, so I ran this by him, although he's a surgeon and this isn't really his bag, but he say's here in Germany (where we live) there also isn't a specific test for this either, the decision wether or not u have CFS is "clinical" this means the doc decides on whether your symtoms tick all the boxes this is probably the reason that your doc won't commit himself on paper. we assume that you are only 23 and the 86 is your birthyear, my bf says at your age CFS is a bit unlikely ( only old bats like me at 40 are more susceptiple!!!!- charming!!!!) no, seriously, could you be "burned out" coping with the stress of uni AND a job is not easy, could u bin the job? or do u have to work? my BF says exercise is a good idea cos it releases a chemical from the brain (forgotton what he called it) and this chemical promotes a feeling of well being, but exercise in moderation, you can't go at everything like a bull at a gate, uni, exercise, work, housework, homework and, and, and, otherwise >YOU will collaspe in a heap, anyone would- could of course be the long dark days dragging you down too. Maybe try "light therapy" or a herbel remedy suggests BF. I hope u will soon feel better, love Honeychile
n Response to Update on me re Chronic Fatigue Syndrome (not good) http://www.handbag.com/social/forums-health_health_update-re-chronic-fatigue-syndrome-not-good?plckFindPostKey=Cat:HealthForum:39Discussion:e5aa3eef-889a-4f71-ac6d-7559e35be57ePost:0ad0d0de-296a-42d4-b50b-6d22cdf794db :
Hi Barbie86, sorry to hear you're not feeling so great- my boyfriend is a doctor, so I ran this by him, although he's a surgeon and this isn't really his bag, but he say's here in Germany (where we live) there also isn't a specific test for this either, the decision wether or not u have CFS is "clinical" this means the doc decides on whether your symtoms tick all the boxes this is probably the reason that your doc won't commit himself on paper. we assume that you are only 23 and the 86 is your birthyear, my bf says at your age CFS is a bit unlikely ( only old bats like me at 40 are more susceptiple!!!!- charming!!!!) no, seriously, could you be "burned out" coping with the stress of uni AND a job is not easy, could u bin the job? or do u have to work? my BF says exercise is a good idea cos it releases a chemical from the brain (forgotton what he called it) and this chemical promotes a feeling of well being, but exercise in moderation, you can't go at everything like a bull at a gate, uni, exercise, work, housework, homework and, and, and, otherwise >YOU will collaspe in a heap, anyone would- could of course be the long dark days dragging you down too. Maybe try "light therapy" or a herbel remedy suggests BF. I hope u will soon feel better, love Honeychile
n Response to Update on me re Chronic Fatigue Syndrome (not good) http://www.handbag.com/social/forums-health_health_update-re-chronic-fatigue-syndrome-not-good?plckFindPostKey=Cat:HealthForum:39Discussion:e5aa3eef-889a-4f71-ac6d-7559e35be57ePost:0ad0d0de-296a-42d4-b50b-6d22cdf794db :
Quoted:
I posted a while ago thinking I may have CFS. I went to my GP and he seemed to take it seriously and referred me for blood tests for anaemia, thyroid function, protein levels, diabetes, etc, and, as I guessed they would, they all came back clear. So, I went back today to discuss where to go from here. Cut a long story short, he basically said I do have CFS, but he won't diagnose it as 'there is no test' for it. I pointed out that in the info he gave me, it clearly states that if a patient has symptoms and other causes have been ruled out, then a diagnosis of CFS should be made. I have LOADS of symptoms and also risk factors, and this is seriously affecting my life. I have to put most of my energy into my degree and part-time job, and am too tired most of the time to have much of a social life; I will force myself to do things, but dread them as I know it will leave me feeling tired. He unhelpfully said that 'the only treatment is exercise', even though exercise leaves me utterly exhausted and feeling physically ill (everything aches, I feel sick and faint, can't breathe, etc). He said I 'just need to build up to it': I've tried before though and never get past the sickness, faintness, total exhaustion etc. I'm also so tired that I simply don't have the energy to attempt and persevere with this at the moment, though I do make sure I have a brisk walk each day, and my job is fairly physical too. I've just started my final year at uni and they're very strict now about missing seminars etc: any missed seminars MUST be backed up with a medical certificate. I mentioned this and he said 'well, all I'll tell them is that you're tired'. I KNOW what being tired is like, and this is totally different; it is complete and utter exhaustion, it is sleeping 12 hours at a stretch and not being refreshed, it is being physically exhausted, it is losing my memory, getting my words muddled, etc etc. I NEED a diagnosis, and he's basically said I have CFS, so why the refusal to make it official? Maybe he thinks I'm making it up, who knows? I'm so frustrated, it's like the endomteriosis battle all over again. I'm terrified that my work will suffer at university and I have nothing to explain why; I'm terrified I'll sleep through my alarm one morning (as I frequently do) and miss a seminar, and end up in serious trouble. This whole thing is so depressing, I feel like no-one takes me seriously and thinks I'm making a mountain out of a molehill, and that's just not me at all. I think I'm going to have to go private, but I don't know if anyone will see me without a referral. I'm seeing another GP on Wednesday and will see what they say, but in my practice they tend to stick together, plus my GP is the prcatice head, so I can't see this other GP going against what he's said. Does anyone have any advice? Does anyone have this condition or know of any specialists in it? I feel I'm so close, and yet so far. I know there's no cure as such, but there are treatments available, and like with the endo, I just want an official diagnosis so people don't just think I'm getting all het-up about a little bit of tiredness...
Posted by barbie86
Posted by barbie86
I think you need to change your GP and if I was you I would be tempted to make a complaint about him, as he is being very unprofessional. Perhaps you should keep a diary of your symptoms to show just how much this is affecting your life? Have you considered alternative health?
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