Does this sound familiar

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I am writing on behalf of my partner. The reason for my writing is because my partner has been going extreme tiredness for the last 2 years and though out the 2 years new symptoms have been developing and are now intensifying. She is 20 years of age and it started when we began university, before we went she worked 5 days a week while being at collage. When she started university she hated it and went through a lot of emotional distress because of it. Around the same time she became ill with “flu”/ cold like symptoms. However, the tiredness did not go away but got worse. She goes to bed at night exhausted and wakes up just as tired as she was before.

Though the year she has developed other problems such as panic attacks, stomach problems (diarrheal and constipation), an intolerance to certain foods, some sore throats, muscle pain (in the form of back and leg pain, to the point of tears and not being able to walk) and bloating of the stomach.

We have gone to a number of doctors, had a lot of blood tests that show nothing and been told a lot of things like its depression or pots none leading to an answer. As the last years gone by more symptoms have come about and are getting worse. She is now running out of hope to getting better. After starting back at university for her last year, she feels she cannot carry on after 2 days due to the fatigue.

I was wondering if you could give us your opinion

Many thanks

Jkerr 

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  • Posted

    Hi there,

    How distressing for you both. Has cfs/me been suggested yet? Is there anyway she could take a year out or study part time? I do know a university student who had cfs/fibromyalgia and managed to graduate but did have to take some time out. If the uni Isn't aware of your girlfriends condition, this needs to be done so she can be supported by them.

    New symptoms, for me myself-yes I have had a variety of them and they vary n intensity. Hope is a huge part In this condition. Tell her that it can be really distressing but not to loose hope, Symptoms come and go and to be kind to herself. Rest when she needs to and that there are others here in a similar situation. Sometimes just knowing that can help.

    Hope that's useful

    B

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    • Posted

      Thing is Chronic fatigue has been thrown around and everything she has seems to ponit to that and i wanted to get an opintion form somone who has it to tell me if is that or not? We have gone to a lot of doctors and they dont seem too bothered and don't relises how down she gets because she doesnt have energy. Do you think it is a possiblity that it is this? She really wants to have a normal life and wont give it up especcially when shes not getting help to deal with it and no one seems to be trying to help her
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    • Posted

      Hi again,

      Do you live in the UK? Alot of people on here don't so I ask because my experience is that for cfs/me to be seen, blood tests have to be normal before you can be referred to the cfs/me clinic. I actually asked my doctor if I could be referred. I had my symptoms for 18 months at that point and it was only when a friend was being referred there as an aftermath of post viral fatigue, that I thought it may help me.

      It is an invisible illness as most people with it look 'normal'. If it is is cfs/me, like diagnosisisalie says, can you pick up some of the extra responsiblity? I find it so hard to let others do things but, i ask more now because things have become harder. So, I can appreciate how your girlfriend may feel if you do say you'll help more. Especially as she seems to have been very active before. To be fair, your support here is worth its weight in gold. Tell her to keep at it and don't be fobbed off. If the gp is unhelpful, find another gp.

      Again, tell her not to loose hope and let uni know what's happening.

      B

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    • Posted

      Yeah we live in the UK. I try to help as best I can but I am not always around cause we go to diffrent univeristys unfortunately. Thank you very much for your support and advice we both appreciate it
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  • Posted

    Hi

    I am sort of in the same position , I am 38 and have been going to school for 10 years and have had to quit school because I can not intern with the expectantcy of energy around children of special needs , my major. I do not have the same symptoms that your partner has , which is what they call FIBRO when you have a group of unknown symptoms and the doctors can't pinpoint  it , it is truly different fall all. I do have to say make sure that you can encourage your partner and try to pick up some of their other responsibilities. I would definitely try to fix the symptoms as they come and pray. Never give up and don't be satisfied with a label. Good luck . I know that I got some relief with accupuncture.

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  • Posted

    To answer your first question - yes, this does sound familiar as CFS/ ME as it affected me, especially the 'flu type illness at the start, followed by tiredness which didn't get better, and the pattern of extreme fatigue not relieved by rest. But I can't offer a sure-fire cure, I'm afraid. One tip is to try not to get over-tired, so stop just before you get exhausted, if possible. I know that might not be practical, however. My university was very understanding - I was studying part-time anyway, but they gave me extra time to complete assignments, and at one stage when I couldn't get to lectures, another student was allowed to record them for me so I could do my studying lying on my back at home! It also helps if you can find a doctor who believes in CFS as a physical illness/disability, not all doctors do.
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    • Posted

      That sounds like a good idea, letting the univeristy know would hopefully take some of the pressure off. It is just annoying the constant being passed around to another department 
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  • Posted

    My son has ME he has the same symptoms as your partner he has now been diagnosed with AS tell your partner not to give up but to ask her GP to refer Dr to the CFSME team they were the ones who helped my son and finely we found out what all his symptoms were good luck 
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  • Posted

    well i can say one thing for sure, she is lucky to have you in her corner, its taken me 20 years to find a supportive partner who actually wants to help/support me and who actually see's past the illness.  I guess if you have been there from the beginning you have seen the change for yourself but its one of the toughest things sometimes trying to get others to realise that you are not weak and just not coping with life like everyone else does and that there is actually something wrong.  Good on you for being able to see that for yourself, we need more people like you and my other half in the world! 

    When I was your partners age I was just sleepy a lot and it would come and go for months at a time.  But her symptoms sound very similar to how I became later on down the track.  The constant none stop fatigue like she is experienced started in my late 20's (I am now in my late 30's).  

    My IBS symptoms didn't start until my early 30's.  I had ibs(d) daily and painfully for about 5 years before finally getting it more under control and its only in the last couple of months i've really sussed it (i think anyway - sometimes you think you have it sussed and realise it was working by chance and not because you had the right method - but its been 2 months now so fairly certain.  I have completely cut out all cooking oils (including olive oil), i don't eat much processed food anyway but what I do eat I make sure is free of veg/palm/rapeseed oil - its in most things. I mostly make my own stocks/bread/doughs (when i'm up to it of course so a freezer is my best friend).  I'm not sure about shea as i am still in the middle of researching all the different fats.  I think coconut oil is okay.  I tolerate animal fats in reasonable amounts but don't have too much.  

    The frustrating thing is, when i first had ibs my GP at the time told me it could be down to fats, but there is a big push to get you to give up/cut down all the animal fats and then tell you you need to up your healthy fats like olive oil, avocados etc.  It may be okay for some but i now know that was my biggest problem.  They could never understand why i couldnt eat porridge either and its only recently by a chance article i read that i realised oats are high in the same fats as cooking oils.  I thought I had intolerances to all sorts of food until I cut these out, I can now tolerate most things and can eat more fruit than before - although oranges cause burning as i found out just yesterday - ouch.  

    Just on the off-chance your girlfriend does find this helpful for her ibs its palmitic acid, palmitoleic acid, oleic acid and linoliec acid that I have been reading about - although I don't know if its one of these or all that are problematic. 

    Prior to finding this out I kept being told that I must have bacterial overgrowth syndrome and when my results came back with no elevated levels of any bacteria i was told you can still have this syndrome without elevated levels during testing - they will tell you anything to get rid of you!  I had previously thought the FODMAP diet had helped but i realise this was because i started cooking more using home made vegetable stocks to make soups, stews and stirfrys.  I really hope your girlfriend finds this helpful - i know the misery she must be feeling with this on top of the fatigue aswell.  

    If your girlfriend suffers with insomnia (you dont mention this but many of us do) its worth trying to get help with this.  My doctors tried for years to put me off taking sleeping tablets but they really did help get me out of a hole.  Just take one for one night didnt do much at all, but when I took them for 3 or 4 nights in a row I started to improve and a lot of my joint pains were alleviated.  I don't take them all the time as I dont want to rely on them or my body get used to them and not work anymore but it may help with getting on track .  We are all different of course but the most helpful I have found is Zimovane, as although it takes me a good hour or two to get going on them in the morning I can be more productive.  

    I have been talked into trying low dose amitriptyline at the moment but even 5mg is too much (the lowest dose is 10mg so am having to chop the tablets up), it feels like i have taken 10 steps back in my progress, as whilst they do help me sleep and this has again lessened my joint pain, they make me feel heavy and cant get going for most of the day, it give a very similar feeling to the heavy feeling people get with cfs/me but not quite as bad - still pretty miserable tho.  

    I totally understand her feeling like she is running out of hope, but please tell her from me not to.  I am far from cured but even just 2 years ago I could never in a million years imagine that i would feel as improved as I do now - although I am far from cured - just that I have lost the really heavy walking through molasses feeling and have more of a routine daily - or at least I did until I tried the amitriptyline - but please also bear in mind apparently people do get used to them after a while, i just dont know how long that while is and whether I could stick it out to find out. 

    Also research recently is being taken more seriously and there are many more people fighting our corner now.  You only have to look at other medical research going on to see how much faster things are moving.  There was a really good interview on Solvecfs website by stuart murdoch of Belle & Sebastian about his dealings with ME, not that we should have to have famous people speaking out to make people believe us that this is a real illness but its great that people like him are using their position to help others suffering like him, helping give us credibility and speaking out himself when I am sure in the past he has had to endure the same ridicule we all experience at times.

    Obviously your girlfriend has had all the usual bog standard tests, the only things I would check with you are whether she has been tested for coeliac disease (if not please have a look at the uk coeliac org website about testing and how its done - as when I had it done i wasnt told things like "you have to be eating gluten for a number of weeks before being tested", as if not the results wont be worth they paper they are written on, luckily i found out beforehand and delayed my appointment.  

    The only other thing  i found out recently on visiting a rheumatologist was that the only thing i hadnt had tested was Vitamin D deficiency, it turns out i was borderline so as we are going into winter my GP has recommended I take a D3 supplement.  I was surprised as i walk my dogs everyday but i guess with all the advice on sunscreen and being careful in midday hours, perhaps I have gone that way too much and not allowed my skin to soak up the good rays. 

    I apologise, I am well aware that I have a real tendency to ramble but dont seem to be able to write any other way.  Just wanted to try and make sure I cover as much as possible, in case there is anything that she might benefit from.  Please send her my best and tell her to keep fighting (but not to forget to take regular rest breaks whilst doing so!).  I know how frustrating that is as I am currently trying to re-train and keep stopping and starting and mostly stopping but it will be worth it in the end - but i wish her well and there is every hope smile

     

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    • Posted

      Thank you for your kind words and your support they are really helpful. A lot of what you are saying sounds so familiar to what she is going through and has seen in the last 2 years. The main annoyances is the not being given a name so we can start treating it. I know she finds that the hardest part because when she tries to tell people they don’t get it and just think it is nothing.

      I have told her to come on and talk to you all on here, I feel that if she see’s that there is other people feeling how she feels then it could help her keep going.

      Thank you very much for your reply it means a lot to both of us  

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    • Posted

      Sorry its taken me so long to respond to this, have had a bad couple of weeks, trying a new medication to help me sleep, it knocked me a bit sideways at first but think its beginning to help now i'm used to it. 

      I really hope your other half has found some useful information on here, none of us can fix her but we are all here for the same reason and everyone always seem more than happy to help where they can.  

      If she's not come on here yet tell her I give her a nudge smile

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