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Not sure if it's Chronic Fatigue Syndrome, Fibromyalgia or Polymyalgia Rheumatica?

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anna41347
anna41347

Hello everyone! I am really hoping someone kind out there could shead some light or even comfort me a bit here. I am feeling a bit desperate now...

The story so far,and I'll try to keep it as short as poss:

I had a period of great stress in April, following a move into a new flat. within days my hands and ankles started to hurt to the point that I couldn't walk to the bathroom in the morning and hands felt like they'd been clenched all night (and still do). I had some severe cold sweats where my clothes would be soaked in minutes, severe sore throat and a thirst like i have never experienced in my life (I'm a 36 year old female from kent) and severe tiredness. I quit drinking alcohol and smoking and over about 2,5 months of rest the symptoms almost went away apart from the stiff hands and occasional fatigue and a shakey feeling where i need to lay down. 

Now 2 weeks ago a sore throat started after another period of stress and some alcohol and cigarettes (two nights out), the sore hands are worsening, my sore ankes are back, i have a severly sore throat with white spots on the back of my throat, severe fatigue and some thirst and itchyness around my eyes, but not as bad as before. 

My bloods have been taken over and over and I have had a CT scan and ultrasounds of my liver, pancreas, womb. It came back that I have some low level of inflamation in my bloods, elevated liver enzymes, high cholestrol and a small amount of fat on my liver and kidney stones.

I am a healthy weight, eat a very healthy diet and exercise moderately. I get sun and also take a vit d supplement along with folic acid (as i am trying to get pregnant for the first time), milk thistle, borage oil and a probiotic daily. I had glandular fever as a teenager, very badly and I also have a family history of auto-immune problems. Mum has mialitis of the spine, auntie (mums sister) fybromyalgia and nan has sjogrens syndrome and both nans have arthritis. 

If anyone can relate, shed some light or advise, I would be incredibly grateful. It's seriously getting me down.

3 likes, 65 replies

65 Replies

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  • EileenH
    EileenH anna41347

    Posted

    I suspect it is mostly down to stress - no autoimmune disorder responds well to stress and having glandular fever does tend to leave a bit behind and the family history of autoimmune disease does make it more likely. If your sore throat has white spots it probably is bacterial. I assume you have had your blood sugar levels checked in response to the terrific thirst - although drinking plenty of non-alcoholic fluids is also important.

    Your age does make it slight LESS likely it is PMR though I emphasise it isn't impossible despite what some doctors will try to tell you! Raised liver enzymes are seen with that - again, a lot of doctors don't know that either. I had something that sounds very like what you have when I was in my late 20s, I was quite poorly for about 6 months and then it all improved dramatically - just as I got to the appointment with a specialist. He decided it all looked like a viral infection that had finally cleared up on its own as they usually do. The fatigue persisted for several years when climbing stairs for example - but then, I also had a little girl by then and having kids doesn't help the TATT syndrome (tired all the time)! In retrospect, it is fairly likely that it was a mild case of ME/CFS, it fitted the acute phase which lasts at least 6 months and then is followed by the fatigue - but it was still called yuppy flu in those days and not taken seriously!

    I really wouldn't omit dairy from your diet - in fact if you cut anything, cut down on carbohydrates because they contribute to raised cholesterol levels (I know, doesn't make sense unless you do biochemisty at uni). Vegan is all very well and I am not decrying it done properly but unless you go to a great deal of effort you are not taking enough protein and that is bad for you, especially if you want to get pregnant Of course a vegan friend will recommend it!

    I do hope you find some answers. Your blood tests do suggest there is something going on but you are seeing a specialist who may see something that the others haven't seen. But as I say, stress can do an awful lot of things - especially since you have now decided to try to have a baby at an age where you must be aware it isn't going to be as easy as it would have been at 26.  That isn't a criticism but biology works the way it works and there is no changing that.

    • anna41347
      anna41347 EileenH

      Posted

      Thanks Eileen for your detailed reply, there's a lot of useful information there. I do eat a lot of carbs and I am now reconsidering the dairy thing - I think I might go back to eating my freerange eggs in the morning. Yes and as you mentioned, I am aware that getting pregnant will not be easy at this age - but unfortunately, I only met my partner a year ago and he only wanted to start trying 4 months ago - which was still very soon for him, but he realises that the clock is ticking! I would have loved to have started a family sooner, but I didn't have a partner for many years so it was a bit tricky. who knows, if my health picks up, it could happen. I had a big fibroid removed from my womb in 2012 though and had to have a c-section type op as keyhole surgery didn't work - so I wonder if that will also affect my chances of getting pregnant. Anyway, thanks again for your email, it was really useful, have a lovely weekend 
    • constance.de
      constance.de anna41347

      Posted

      Fingers and toes crossed that all goes well with a pregnancy.  

      All the best.  Constance 💐

  • christine_fay
    christine_fay anna41347

    Posted

    Don't cut out dairy... Try lactofree milk. Cut the usual carbs but substitute with cold cooked pasta and legumes like lentils and beans.

    Cut all alcohol for at least six months and only go back very sparingly with a little red wine or some mineral rich beer in small glass.

    Atkins diet for a week or two will tell you if carbs are making you worse.

    Carbs contribute to inflammation inflammation does horrible damage if not brought under control.

    • anna41347
      anna41347 christine_fay

      Posted

      Thanks Christine for the good advice. I am going to keep up with the no drinking - as it seems to have been part of the trigger with my recent flare up and I will definitely cut down on the carbs, seems like a lot of people have said that. I also decided this morning not to quit dairy and had a nice breakfast of eggs, smoked salmon and spinach. Thanks again for all the useful information..
    • EileenH
      EileenH anna41347

      Posted

      Now THAT sounds an absolutely delicious start to the day! I don't eat enough spinach - although I love it! And your salmon is an antiinflammatory food - good excuse to eat more :-)
    • constance.de
      constance.de anna41347

      Posted

      I love salmon and spinach, but for breakfast?  I make a mashed potato boat (I know, the carbs!!) fill with spinach and top with smoked salmon add a spoonful of caviar - delicious. Also pizzas, no tomato sauce, just spinach, salmon and shrimps.  Smoked salmon on toast for breakfast? Yes, certainly!
    • EileenH
      EileenH constance.de

      Posted

      Why not? Scrambled eggs and smoked salmon is pretty much a standard but adding spinach will make it look far prettier ;-)

      I suspect it is only the western world that has the fixation of certain food for certain meals. Almost all eastern countries have similar things for all meals and spinach or close relations feature large in vegetarian dishes in China. You often see cucumber on breakfast buffets in Germany - is that any different really eaten alongside a boiled egg than a spinach omelette? 

      Spinch is very useful - next to no carbs!

    • anna41347
      anna41347 constance.de

      Posted

      all of that sounds yummy! I add a bit of walnut oil and nutmeg to my spinach if I have it for brekkie. got to get the spinach in somewhere. I seem to be most motivated with my food in the mornings so I try to cram alot of good stuff in then - most important meal of the day and all that!
    • anna41347
      anna41347 EileenH

      Posted

      I think you're right there Eileen. I live in germany and sometimes when you eat breakfast out, you get a lump of brocolli on your plate (uncooked) alongside, your tomatoes, eggs. jams and cheeses.. oh and indeed cucumber. I must say, uncooked brocolli is a step too far - unless they do it for a garnish effect. who knows. I lived in Sweden for a while too and it's the same there - cheeses and veggies for breakfast. I prefer it actually to sweet stuff..
    • constance.de
      constance.de EileenH

      Posted

      I expect you found that out in China.  Fried spring rolls, fried rice, veg , etc. for breakfast.  I quite liked it, but my husband is a bread person and after 3 days was doing his nut.

      Didn't think anything wrong with cucumber for breakfast (been in de. too long I think).  I remember my mother saying "cheese for breakfast"?  She couldn't understand it!

    • constance.de
      constance.de anna41347

      Posted

      Interesting, where in Germany do you live?  Never met anyone on this site who lives here.
    • anna41347
      anna41347 constance.de

      Posted

      I live In the Capital, Berlin. By the river spree. It's a much better lifestyle than East London where I was before I came here. Where are you based?
    • EileenH
      EileenH constance.de

      Posted

      I have to say I haven't ever been offered brocolli for breakfast in Germany! But let's face it - breakfast and Abendbrot are almost identical in much of southern Germany at least. But I like German breakfast - in most places I get at least cheese and Wurst and am very disappointed when there aren't boiled eggs! 

      There was no lack of bread for breakfast in China - not in the hotels we were in but they were used to having German groups staying. By far the best was the hotel in Wuhan which presumably had foreigners visiting the adjacent university campus. They had a superb baker in their kitchen - even I ate his pastries and the bread looked very good.

      I love uncooked brocolli - and cauliflower. And - believe it or not - sprouts! I had the most superb raw cabbage salad yesterday lunchtime up the mountain - it had kummel obviously but there was something else haunting the taste that I couldn't work out and it was lovely.

      OK Anna - where in Germany? Maybe you aren't a million miles from either me (in Italy but it isn't far to Bayern) or Constance who is up north!

    • EileenH
      EileenH anna41347

      Posted

      Heaven knows what hidden word caught that post! I was discussing where we live as well as breakfast.

      No, Berlin is another section covered! A mere 8 hours drive says Google but I don't believe THAT! I should have been visiting Berlin at the end of October but we drew the line at paying in order to be an invited speaker at a meeting! What a shame - we could have met up for a coffee. My best friend in Germany's daughter is based in Berlin still I think - she is the same age as my daughters and an actress.

    • anna41347
      anna41347 EileenH

      Posted

      that's a shame, I would have liked that. But pay to be speaker at a conference? pah! I mean that's what draws people to these events, the speakers and the networking. What type of event was it?
    • EileenH
      EileenH anna41347

      Posted

      Something about mitochondria ;-) Probably relevant to PMR if the truth were known!

      Ah well - a pleasure deferred is a pleasure gained. I will definitely be just a couple of hours away about this time in 2 years - at Halle. 

      Are you German or another "ex-pat" like constance and me?

    • anna41347
      anna41347 EileenH

      Posted

      Yes, I am indeed another ex-pat  - originally from the the south of England. I have mainly lived in London and now here in Berlin, oh and Sweden for a few years when i was a kid. Where are you from originally and what made you move here? Mine was for a more relaxed lifestyle - London was doing my head in. I still go back to see my parents who live there, right by the Thames in E1.. it's a bit too busy for me nowadays.
    • EileenH
      EileenH anna41347

      Posted

      I was born in Herefordshire, met my husband at uni in Dundee, had a brief essay to London when he finished his degree and never wanted to do anything with science again and went to work for BP. Then we went back to Dundee for him to do his PhD (science of course), money ran out so he worked as PA to the new Principal of the Uni (a concrete specialist) and then we went to Erlangen in Bayern for a year and stayed 10 and he did his Habilitation. We went back to Scotland but always said we wanted to live in the German-speaking part of Europe again. We had the chance to buy a holiday flat - the other option was pay off our English mortgage (we'd moved again) but that was no fun! Here is German-speaking Italy and has all that is best of both worlds. And a lot of ski areas which mattered 10 years ago. PMR has rather interfered with that but we chose to retire here when he got fed up with the NHS. The weather, the food and the wine are all better than the UK and he has research contacts in Innsbruck which keeps him busy and out of mischief. No desire or intention to go back! One daughter is in Whitby and the other just outside Edinburgh. There you are - my life in a paragraph!
    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      Sounds good to me anyway . . . .And now no need to write the book!   J

       

    • anna41347
      anna41347 EileenH

      Posted

      It sounds lovely where you are, mountains, clean air, decent grub and the benefit of having the italian german mix - Italians are a lot of fun from my experience! Berlin has many plus points, food isn't one of them, but we do get better veg and a lot more organic food stores. Infact, where I live, there are a lot of alotments and people leave out free fruit and veg quite regularly. No decent fish though obviously! The air is definitely cleaner than London and I have a nice cheap flat in a green and safe neighbourhood. Not bad at all! Thanks again for your advice, my mood has definitely lifted from all of this. I'll keep you posted on the progress.. and I wish you well! My partner is out djing in Berlin this evening and I am laid up drinking apple cider vinegar and gargling salt water for this strep throat! Not the best one, but that's the way it goes..
    • linda17563
      linda17563 EileenH

      Posted

      My son has just had a holiday outside Edinburgh, he thought it magical....God`s own country as they say! (not religious) but then he does live in Norfolk...flat...like myself, which is easier on the muscles with PMR/Fibro!!.......
    • EileenH
      EileenH linda17563

      Posted

      Italians are certainly NOISY! My neighbour answers the phone and immediately moves to the balcony about 2 metres from mine where she proceeds to complete the conversation at the top of her voice! It seems to be an inbred response...

      Linda - where outside Edinburgh? My daughter lives in Rosyth but no-one these days has ever heard of it! It's a massive former military town - built for the docks there in the war. It was very pretty this summer - vast islands of wild flowers planted to encourage butterflies. Those bits remineded me of our alpine meadows when we there a few weeks ago.

    • linda17563
      linda17563 EileenH

      Posted

      Well, my son had booked originally a lovely big house,  not far from Edinburgh, then the owner let everyone down, but selling it.  He had to quickly find somewher...flights were booked etc.....he ended up in a wonderful lodge...sleeps 10, with a burn outside, sheep, calves walking down the road. from nearby farm...very remote!.. It was 5 mins drive from Hawick,  ....which was closed a lot of the time!!  He totally destressed there!  It was a lot further than he thought from Edinburgh, but went a couple of times anyway....but not much choice of accomodation when let down at last minute....he loved it because, lack of people and traffic...and very quiet!  no mobile signal, so teenage children had to be occupied!, but it had a games room top floor....lovely walks etc.......no phone calls to listen to!  Each to their own I suppose...
    • EileenH
      EileenH linda17563

      Posted

      Hawick is a long way from Edinburgh - but there are people who commute! Edinburgh at this time of year is hopeless for last minute - it's the Festival.
    • linda17563
      linda17563 EileenH

      Posted

      Well, my son and d/i/law were really taken with the area (borders) but realistically to move and find work...well.....and the teenagers are another thing!  Can`t live without a signal!!  Things can seem different on holiday....Why did you settle for where you are....was that a result of holidaying there?  As I have said to you in the past...Lake Garda, a dream, but could I live there, calm water, twinkilng lights in hills opposite, and near the wonderful dolomites?...I think so! smile
    • EileenH
      EileenH linda17563

      Posted

      We're a couple of hours from Lake Garda - we nip down there with the camper van if we have time and the weather forecast is good.

      We lived in Germany for 10 years and always said we wanted to live in a German speaking area again. We knew the area from skiing when we lived in Germany and kept going there. Then we had enough money to buy a flat here - first for holidays but luckily, although small, it is big enough to live in. 

      I've just come in off the balcony at 9.15pm - still not cold, just evening cool. 

    • linda17563
      linda17563 EileenH

      Posted

      How lovely...hope the neighbour didn`t get any phone calls while on the balcony!...It`s expensive to holiday in Garda now, and don`t feel well enough to cope with airports any more....with PMR/Fibro/ME pain and fatigue are a huge challenge, can`t walk much of a distance.......but you can`t take away the wonderful mixed memories! (911 happened while we wrere there!)
    • EileenH
      EileenH linda17563

      Posted

      We camp, always have done and to be honest are lost without our stuff being "in the car/camper". Touring with the car is bad enough - trips using flying are a pain in the butt!

       

      However - if you still feel able to holiday with the car - after all you can stop any time you like and we do - many of the campsites have superb bungalows and mobile homes, all air-con - and restaurants on site. As long as you don't go in July/August (when it is far too hot for comfort anyway) or the peak holidays times at Easter and Whitsun (proper Whitsun, not Spring BH) it is very good value for money. When we come to the UK we usually have at least two stops between here and the crossing - makes for far more relaxed travelling. If I have anything to do with it is even more!

      We were in Lazise on Camping du Parc on 9/11 - I even remember the pitch...

    • EileenH
      EileenH

      Posted

      PS - airports aren't too bad if you claim disabled help - transferred in a wheelchair or with a golf cart. 
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