advice pleaseee!

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advice pleaseee!

Postby splashy0910 » Sun Nov 09, 2014 7:59 pm

I'm 17 and in the last 2 weeks, I have been diagnosed with Fibro and CFS. This is the 8th month I've had it and at the moment my symptoms are a lot worse. The cold weather seems to be a result of my relapses, I dread to think what it will be like when it snows :yikes:

I'm really struggling to concentrate at college and have been released of placement till january as I am too ill to go. Does anyone have any advice on how to concentrate and actually get work done? At the moment I can only manage three lines a day and not being able to do anything else. As I am level 3 I am only able to have a laptop support wise and I don't know what to do.

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Re: advice pleaseee!

Postby goldie » Sun Nov 09, 2014 8:30 pm

I think we would all like to find the answer to your question, sorry this has happened to you at such a young age, The only thing close to an answer is pace yourself realistically . Don't do too much - you will suffer the next day. Sorry I can't give you the answer you are looking for. I am 5 years diagnosed. The winters are the worst for me too :(
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Re: advice pleaseee!

Postby iblinkin » Sun Nov 09, 2014 9:42 pm

Hi splashy0910, sorry that you are dealing with this illness and like yourself I've had this since i can remember. I would suggest you in the index here in the forum as there's a wealth of info for you there that will and should be heplful to you. The one thing i have found that has helped me with memory & concentration is a product calledNeuro-Mag and you can get this online but do keep in mind that it is pricey.

This product is designed to deliver magnesium to your brain as our bodies do not process magnesiun like healthy folk do.
I hope this helps you some and please keep us updated.

Gentle hugs.
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Re: advice pleaseee!

Postby splashy0910 » Sun Nov 09, 2014 10:05 pm

What is pacing? I've been told to pace by doctors and have been kicked out before I can ask. Thanks iblinkin I will have a look. Goldie how do they affect you? This is my first winter with it so if you have any good advice on how you look after yourself it would be appreciated.

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Re: advice pleaseee!

Postby katherine244 » Sun Nov 09, 2014 10:37 pm

Hot water bottles are good if you are in but if you're like me you'll hurt in so many places you won't know where to put it!!!
Apart from that I've not found anything else and everything just hurts soooo much more, especially when it is damp/wet too. X
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Re: advice pleaseee!

Postby katherine244 » Sun Nov 09, 2014 10:41 pm

Also, try filling in an ME diary (got an app on my phone). It will help you to pace yourself by identifying what activities make you hurt more and more exhausted so you know how much you can get away with doing without burning out or hitting the wall!! You can add comments about weather and stuff too so you can work out how much you can do in different conditions.....
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Re: advice pleaseee!

Postby Polaris » Mon Nov 10, 2014 10:31 am

:-D I went through 3 years of university using pacing techniques. It wasn't easy but the first and most important thing was being assertive about your needs. Under the Disability Discrimination Act an organisation is under an obligation to make reasonable adjustments to facilitate your needs. For me the Act did not exist at the time but I was very assertive. I got funding for a laptop and would take pillows in to tutorials and lectures and sit at the back near a wall where I would put 3 chairs together to lay down on and rest. If I couldn't do this I would lay on the floor.

Pacing was very important because I couldn't sit for very long especially with my severe coccydynia. So I would alternate between sitting and laying down. I spoke to the university welfare officer and arranged for a separate exam room and invigilator for myself and 2 other students with disabilities (on my course). Extra time was given for some breaks and extra time to complete the exams to compensate for the difficulties. We didn't always use all this time. I used every memory technique I could think of and find. Put important facts in to song or rhyme to aid recall.

I also worked very closely with another disabled student which was a huge help. I used tape recordings (they still had cassettes in those days) to record study materials and put them on a loop that would play while I slept. I bought Fisher Space Pens the ones used by NASA that write upside down and a few extra refills as they don't last very long. I used a clipboard to write on while on the floor and during exam times would even take in a camping mattress to make sure I was comfortable (relatively) during the exam. I would also have hot or cold drinks and a snack with me, not to mention my painkillers.

Sleep :sleep: is really important in Fibromyalgia and ME, (I have both) as they are considered primary sleep disorders. We don't get the same quality of restorative sleep :sleep: as ordinary people. In fact the symptoms of FMS can be simulated by depriving someone of sleep for 3 days. The difference is that someone without the condition will return to normal once they sleep :sleep: . So getting the best quality sleep is essential to help you keep a clear mind. Rest is essential and taking a break from hard study is vital in helping to clear your mind.

:yikes: A bit about Pacing: With Pacing it's important to make the change before the pain arises or increases. So therefore if you can sit for 10 minutes and then the pain starts or builds up you avoid sitting for that long and take about 20% off. So you would only sit for 8 minutes and then change. If possible you would gradually increase the duration and build up tolerance. If you can't build up tolerance at least you aren't letting the pain take hold. It is really hard to maintain the Pacing and most people will eventually stop using it after a while but it's still something you can keep in your tool kit.

After university I went to Law School for a year and practiced the same techniques, but Law School was a lot further away from home and the daily journey was unavoidable and exhausting and I eventually ground to a halt :cry: . There has been a lot of progress since then in the understanding of the condition and the treatment with 2 drugs now licensed for treatment. If possible get a referral to a specialist Fibromyalgia centre (usually under Rheumatology). I attended the one at Guy's hospital in London. :arrow:

You did mention snow and it is important to keep warm as the cold can cause difficulty. Actually :nono: it's not really the cold that is the biggest issue but rather the barometric pressure but keeping warm will help (I have a heated cushion, fleece and an electric blanket and several hot water bottles, but there is no getting around the air pressure without migrating to a better climate. So winters will always be more difficult. I actually have 2 barometers and a hydrometer to check humidity. I've also used daylight bulbs that simulate sunshine to help improve serotonin levels and there are light boxes available for people who suffer from SAD. These days to save energy I use LED's and try to get out when the sun shines 8-) .
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Re: advice pleaseee!

Postby Zia2014 » Mon Nov 10, 2014 12:01 pm

Hi Splashy,

Welcome to the board :)

Have you been referred to a consultant rheumotologist or pain clinic? That's where I started, my pain clinic saw me last week (so 11 months after this all began!) and have talked me through the options - meds, tai chi, hydrotherapy, other medical interventions...To me that appointment was extremely useful. There are also sometimes pain management programmes they run which teach you about pacing etc. So my first step would be to see if that is run in your local hospital (try googling "chronic pain [nameofhospital]" or "pain clinic [nameofhospital].")

In terms of concentration I think most of us suffer from cognitive problems like that. For me personally I am trying to write a novel, and on the days when I'm more ill I just accept I won't write anything. Then on the days I feel a bit better I do something. I know this is difficult when you're studying though.

Can you go back to the support department and see if you are a higher level than 3 with fibro? I can imagine at higher levels you would get extensions etc, is that right? Because that would probably be the single most valuable change they could make to take the pressure off. What are you studying?
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Re: advice pleaseee!

Postby splashy0910 » Mon Nov 10, 2014 6:30 pm

katherine244 wrote:Hot water bottles are good if you are in but if you're like me you'll hurt in so many places you won't know where to put it!!!
Apart from that I've not found anything else and everything just hurts soooo much more, especially when it is damp/wet too. X


I do hurt all over, it's hard to tell what hurts the most and to pinpoint it. I tend to use my hot water bottle on my lower back and usually fall asleep with it there.
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Re: advice pleaseee!

Postby denys » Mon Nov 10, 2014 6:35 pm

Polaris seems to be offering some good practical advice as they have been were you are now so here's hoping you can manage to get through your course :-D :-D :-D
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Re: advice pleaseee!

Postby splashy0910 » Mon Nov 10, 2014 6:42 pm

Polaris wrote::-D I went through 3 years of university using pacing techniques. It wasn't easy but the first and most important thing was being assertive about your needs. Under the Disability Discrimination Act an organisation is under an obligation to make reasonable adjustments to facilitate your needs. For me the Act did not exist at the time but I was very assertive. I got funding for a laptop and would take pillows in to tutorials and lectures and sit at the back near a wall where I would put 3 chairs together to lay down on and rest. If I couldn't do this I would lay on the floor.

Pacing was very important because I couldn't sit for very long especially with my severe coccydynia. So I would alternate between sitting and laying down. I spoke to the university welfare officer and arranged for a separate exam room and invigilator for myself and 2 other students with disabilities (on my course). Extra time was given for some breaks and extra time to complete the exams to compensate for the difficulties. We didn't always use all this time. I used every memory technique I could think of and find. Put important facts in to song or rhyme to aid recall.

I also worked very closely with another disabled student which was a huge help. I used tape recordings (they still had cassettes in those days) to record study materials and put them on a loop that would play while I slept. I bought Fisher Space Pens the ones used by NASA that write upside down and a few extra refills as they don't last very long. I used a clipboard to write on while on the floor and during exam times would even take in a camping mattress to make sure I was comfortable (relatively) during the exam. I would also have hot or cold drinks and a snack with me, not to mention my painkillers.

Sleep :sleep: is really important in Fibromyalgia and ME, (I have both) as they are considered primary sleep disorders. We don't get the same quality of restorative sleep :sleep: as ordinary people. In fact the symptoms of FMS can be simulated by depriving someone of sleep for 3 days. The difference is that someone without the condition will return to normal once they sleep :sleep: . So getting the best quality sleep is essential to help you keep a clear mind. Rest is essential and taking a break from hard study is vital in helping to clear your mind.

:yikes: A bit about Pacing: With Pacing it's important to make the change before the pain arises or increases. So therefore if you can sit for 10 minutes and then the pain starts or builds up you avoid sitting for that long and take about 20% off. So you would only sit for 8 minutes and then change. If possible you would gradually increase the duration and build up tolerance. If you can't build up tolerance at least you aren't letting the pain take hold. It is really hard to maintain the Pacing and most people will eventually stop using it after a while but it's still something you can keep in your tool kit.

After university I went to Law School for a year and practiced the same techniques, but Law School was a lot further away from home and the daily journey was unavoidable and exhausting and I eventually ground to a halt :cry: . There has been a lot of progress since then in the understanding of the condition and the treatment with 2 drugs now licensed for treatment. If possible get a referral to a specialist Fibromyalgia centre (usually under Rheumatology). I attended the one at Guy's hospital in London. :arrow:

You did mention snow and it is important to keep warm as the cold can cause difficulty. Actually :nono: it's not really the cold that is the biggest issue but rather the barometric pressure but keeping warm will help (I have a heated cushion, fleece and an electric blanket and several hot water bottles, but there is no getting around the air pressure without migrating to a better climate. So winters will always be more difficult. I actually have 2 barometers and a hydrometer to check humidity. I've also used daylight bulbs that simulate sunshine to help improve serotonin levels and there are light boxes available for people who suffer from SAD. These days to save energy I use LED's and try to get out when the sun shines 8-) .


Thank you for answering and your advice. My tutor will most definitely not let me lay down, she doesn't really let me do much, just a suffer in silence kind of thing.

I'm taking about 30 tablets a day, paracetamol and cocodomal, Gabapentin and Amitriptylene. These don't even take the edge of my pain.

I will look into getting referred to a specialist place. I ddint get told to go back to hospital that I got diagnosed at so I'm just a bit stranded.

I try and keep warm al the time, as soon as I'm the tiniest bit cold that's it my pain is 10x worse.
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Re: advice pleaseee!

Postby denys » Mon Nov 10, 2014 6:48 pm

Quite often once the hosptal has diagnosed you they discharge you back into the care of your GP, so that's your next port of call. You may find they will help get a better tablet regime going maybe offer alternative therapies/treatments which may get you a little extra relief :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: advice pleaseee!

Postby splashy0910 » Mon Nov 10, 2014 6:52 pm

Zia2014 wrote:Hi Splashy,

Welcome to the board :)

Have you been referred to a consultant rheumotologist or pain clinic? That's where I started, my pain clinic saw me last week (so 11 months after this all began!) and have talked me through the options - meds, tai chi, hydrotherapy, other medical interventions...To me that appointment was extremely useful. There are also sometimes pain management programmes they run which teach you about pacing etc. So my first step would be to see if that is run in your local hospital (try googling "chronic pain [nameofhospital]" or "pain clinic [nameofhospital].")

In terms of concentration I think most of us suffer from cognitive problems like that. For me personally I am trying to write a novel, and on the days when I'm more ill I just accept I won't write anything. Then on the days I feel a bit better I do something. I know this is difficult when you're studying though.

Can you go back to the support department and see if you are a higher level than 3 with fibro? I can imagine at higher levels you would get extensions etc, is that right? Because that would probably be the single most valuable change they could make to take the pressure off. What are you studying?


I'm being referred to the pain clinic but that's all. Apparently it can take up to 18 weeks to get referred.

College won't let me do that, I write all the notes but most of the time I can't do any more than that and I think my tutor is getting tired of me saying I cannot concentrate. She's also always comparing me to another student who had ME and fibro and making me feel guilty.

If I'm on a level 2 course they will put in a scribe and everything but because I'm on level 3 they won't do anything. It's just my course tutor who's letting me have an extenextended deadline, that's it. I'm studying Childcare.
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