Cfs & life!!!

jazabelle

Have you been to the CAB now Katie? Have they suggested anything?

2520years

Hi everyone.

I'm not sure what's wrong with me, but below are my symptoms in order of severity. I'm hoping someone with experience of this illness can give me some advice because I believe my GP is barking up the wrong tree.

1) Extreme fatigue - went part-time, then had to quit work altogether last month
Other symptoms are similar in severity to each other and relatively mild:
2) Occasional weird sensation in muscles in back and legs, a bit likes bubbling or fizzing, accompanied by feeling very ill. I feel like I've been poisoned!
3) Aches and pains in joints and muscles
4) Trapped wind leading to abdominal pain
5) Difficulty concentrating
6) Dry skin
7) Increased heartburn
8) Increased thirst

My GP has:
1) Done blood tests for thyroid problems but found nothing conclusive
2) Taken a stool sample, which came back clear
3) Recently referred me to a Gastroenteroligist

I think my stomach problems are relatively minor, and possibly a symptom rather than the main problem. I tried a gluten-free diet for a month which didn't make any difference.

In your experience, would you say I might have CFS?

mardatha

Dry skin heartburn and thirst no that doesnt sound like ME. Keep pestering him for more blood tests , cant do any harm and might find something ! Did he test for diabetes ?

Mojisola

Have a look at the symptoms here - https://www.afme.org.uk/allaboutme.asp?table=contenttypetwo&id=4

This page - https://www.drmyhill.co.uk/wiki/Category:Fatigue - will give you plenty to go with. You can download a free copy of her ME/CFS regime here - https://www.drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill

karmacookie

2520years wrote: »

Hi everyone.

I'm not sure what's wrong with me, but below are my symptoms in order of severity. I'm hoping someone with experience of this illness can give me some advice because I believe my GP is barking up the wrong tree.

1) Extreme fatigue - went part-time, then had to quit work altogether last month
Other symptoms are similar in severity to each other and relatively mild:
2) Occasional weird sensation in muscles in back and legs, a bit likes bubbling or fizzing, accompanied by feeling very ill. I feel like I've been poisoned!
3) Aches and pains in joints and muscles
4) Trapped wind leading to abdominal pain
5) Difficulty concentrating
6) Dry skin
7) Increased heartburn
8) Increased thirst

My GP has:
1) Done blood tests for thyroid problems but found nothing conclusive
2) Taken a stool sample, which came back clear
3) Recently referred me to a Gastroenteroligist

I think my stomach problems are relatively minor, and possibly a symptom rather than the main problem. I tried a gluten-free diet for a month which didn't make any difference.

In your experience, would you say I might have CFS?

What does the Doc mean about thyroid probs - non conclusive - does that mean you may have?

interested as I had a ? CFS diagniosis which did turn out to be thyroid!

Increased thirst - test fordiabetes

Info about thyroid - fab forum

http://thyroid-disease.org.uk/index.php?option=com_smf&Itemid=93

There have been a few people on here diagnosed with Cfs/Me but turned out to be thyroid.

2520years

Sorry, I may have mislead you there. He found nothing to suggest I have thyroid problems.

I had my fifth blood test this morning. (Two have been messed up at the lab, so I'm not totally convinced my problem isn't thyroid related. Also, my mum had hyperthyroidism.)

It's so frustrating because the Specialist this morning has asked for a blood sample and a stool sample. I've already done this more than once, so we're just going round in circles. I only have minor stomach problems but they've latched on to it because it's easier for them to deal with than extreme tiredness.

karmacookie

If your mum had autoimmune hyperthyroidism (Graves Disease) there is a chance you inherited antibodies. I inherited mine from my Dad, gee thanks dad!

You can ask to have thyroid antibodies tested to find out.

Specialists can get the lab to test for more things than the GP can, so it's good he took more bloods.

willa

2520years wrote: »

Hi everyone.

I'm not sure what's wrong with me, but below are my symptoms in order of severity. I'm hoping someone with experience of this illness can give me some advice because I believe my GP is barking up the wrong tree.

1) Extreme fatigue - went part-time, then had to quit work altogether last month
Other symptoms are similar in severity to each other and relatively mild:
2) Occasional weird sensation in muscles in back and legs, a bit likes bubbling or fizzing, accompanied by feeling very ill. I feel like I've been poisoned!
3) Aches and pains in joints and muscles
4) Trapped wind leading to abdominal pain
5) Difficulty concentrating
6) Dry skin
7) Increased heartburn
8) Increased thirst

My GP has:
1) Done blood tests for thyroid problems but found nothing conclusive
2) Taken a stool sample, which came back clear
3) Recently referred me to a Gastroenteroligist

I think my stomach problems are relatively minor, and possibly a symptom rather than the main problem. I tried a gluten-free diet for a month which didn't make any difference.

In your experience, would you say I might have CFS?

2520, I have been diagnosed with M.E./CFS, the specialist said my history was 'classic' for it. I have had all the symptoms you list, no 6 a bit sometimes, and the last two I've had before at different times, the rest of the symptoms all together - and lots of other symptoms besides. Gastointestinal problems and especially IBS can be very much a part of the symptoms of M.E./fibromyalgia and of course the muscle/joints/exhaustion stuff commonly occur with it.

However most of those symptoms could all occur together in many conditions. Have a look at the symptoms checker facility on the 'wrong diagnosis' site! Strangely, I have put in different sets of my symptoms in it together in different combinations at different times in order to pin down what the hell is wrong with me and most of the time 'chemical poisoning' comes out as the top possibility!

There is also the fact that it is not uncommon to be diagnosed with CFS and for it to be later discovered that the correct diagnosis is in fact something else. I personally know a few people this has happened to - turned out the had MS/coeliacs disease/Lyme disease.

It's often hard to get any diagnosis never mind the right one. Try to find out if there's any CFS hospital clinics/specialists near you and ask to be referred if there is. Keep plugging away with the doctors and good luck.

clairibel

Hiya 2520,

I'm no expert but i have been diagnosed with ME and all those symptons you have can be attributed to it as there is such a variation from person to person on how they feel, i get dry skin, eyes and mouth as do others i have spoke to and have digestive disturbances.....so the list you have written could be ME/CFS or something else as i have found there are several disorders which all take on very similar symptons

I have often wondered if my diagnoses is right and whether it is something else, as i have had symptons which are not attributed to ME....its all so confusing, but with some other disorders there are tests which help to pinpoint it....unfortunatley with ME its a process of elimination.

I have had borderline thyroid tests results, but also thyroid test results which are fine.....my doctor likes to believe its depression related and is swaying towards bipolar diagnoses. I get so tired thinking about it all and feel i might never know the true answer.

2520years

clairibel wrote: »

I get so tired thinking about it all and feel i might never know the true answer.

Haha, I know that feeling. At the end of the day there's only so much you can do. There must still be things you can enjoy. I try to make a bit more of a fuss if there's something good on TV...I can do that with relatively little expenditure of effort.

The only things we should worry about are things we can control. We just have to leave the other things alone. I know it's not easy, but we can only do our best.