Chronic Fatigue Syndrome & Fibromyalgia

Scroll to see replies

Just thought I'd bump this thread up because now I actually have my diagnosis, and I do have CFS/ME.

I'm still struggling, but doing a lot better than I was. Right now I'm doing a really crappy exclusion diet to see if it makes any improvement to my health and it has a bit, but it's really difficult!!
I still can't go out/do things for too long, usually no more than about 2 or 3 hours a day otherwise I'll be bedbound for a few days afterwards. Its a slow process but my doctor thinks I'm starting to make a small break through it, so I'm feeling a little hopeful right now :smile:

Hiya, thanks for bumping this thread. Good luck with the diet. Hopefully it will help you get somewhere. I know how hard it is from doing so much normal things to minimal, almost feeling unsocial level of things. We all know what you're going through to some degree. Hope you get better soon with the right help. I am still waiting on the NHS for my therapy sessions. Keep family and friends informed, and have them on board. PM anytime for support.

Reply 21

titch02

For those of you who have had an official diagnosis of CFS/ME, would you be able to details the tests you've had done? I've been suffering from supposed CFS for 3 years now but my diagnosis was a real mess and have therefore had very little tests before a conclusion was met. Any help would be much appreciated x

Sorry, also how these tests were done....as if in did your doctor refer you to a CFS/ME specialist who suggested the tests, or did your doctor just refer you for certain tests as a process of elimination?

(edited 11 years ago)

Reply 22

fredscarecrow

Original post by titch02

For those of you who have had an official diagnosis of CFS/ME, would you be able to details the tests you've had done? I've been suffering from supposed CFS for 3 years now but my diagnosis nwas a real mess and have therefore had very little tests before a conclusion was met. Any help would be much appreciated x

Sorry, also how these tests were done....as if in did your doctor refer you to a CFS/ME specialist who suggested the tests, or did your doctor just refer you for certain tests as a process of elimination?

It took me about 7 years for a diagnosis but to be honest I havent had that many tests which makes me a bit nervous. I had my blood tested everytime I changed doctor - for diabetes, thyroid, vitamin deficiencies amd red and white blood cell counts. I had a few ecgs because they put me forward for ine which gave some irregular readings but that turned out to be a machine problem apparently. Otherwise I haven't really had anything. I went to a rheumotology soecialist who rotated a shoulder then told me to put on weight and stop moaning...

My last doctor put me forward for a specialist clinic after I first went to him and described my symptoms. I had a meeting with a lady at the clinic and she said I had an official diagnosis.
So even though it took 7 years, Im still quite nervous about my diagnosis.

Reply 23

titch02

I'm the same, I have had such a horrendous time trying to get to the bottom of my symptoms, as they came on pretty suddenly and I was so healthy and active before.

Most of the doctors I saw quite simply didn't take me seriously and even when I saw a Chronic Fatigue specialist they did a physical exam and asked some questions and then diagnosed me straight afterwards. It just didn't seem thorough enough, especially as some of my symptoms and I quote my current doctor are "unusual". I have had plenty of blood tests but that alone doesn't really put my mind at ease.

I have also got new symptoms in the last 6 months which are being put down to CFS. I just feel like now I'm forever going to be stuck with this label of CFS, I'm so fearful of being misdiagnosed.

I just wanted to hear other people's experiences of diagnosis to see if I should have had any other tests done. Thanks for your reply fredscarecrow, I share your concern.

Reply 24

koistyjayne

Original post by titch02

I had loads of tests done, it took a year before I was diagnosed with CFS which is a lot sooner than most people by the sound of it!

My first symptom that appeared was a really bad pain in my stomach and nausea so I've had countless blood tests for coeliac disease, anemia (which I've had twice already), thyroid trouble, diabetes, full blood counts....I can't remember what else but I've been tested for about 30 different things via blood tests! But I've also had an abdominal ultrasound, an MRI scan and an endoscopy, along with a number of physical examinations at the doctors of my tummy, arms, legs, feeling of glands etc. I was also put on antidepressants for a while to see if it made any difference which it didn't, because I wasn't depressed. So my diagnosis process has been pretty thorough. But I did have the MRI scan and endoscopy done quickly through a private hospital because I couldn't wait around on the NHS anymore! But at least I know that all my organs are fine and there's no damage or irregularities there. Now I'm just seeing a dietitian and on painkillers..

Hope that was a little helpful!!

(edited 11 years ago)

Reply 25

titch02

Thanks koistyjayne, really helpful info. I am sure I've had all the routine bloods and have also had Lyme Disease and Coeliac Disease tests. I have real problems with pain in my stomach/appetite loss/nausea so might look into getting some extra tests done there. I also seem to have pretty bad cognitive issues and dizziness/fainting so was wondering if anyone else has had any neurological tests on here? I've never been offered any medication for symptom control, seems bizarre. Seem to just send me away and hope I can deal with it!

Reply 26

fredscarecrow

Original post by titch02

I think it does depend on where your symptoms are focused. So I never had an coeliac tests because I don't generally get nausea or stomach problems. My main problems are the fatigue and awful joint and muscle pain. So I have been given medication (and was by a doctor who was different from the one who diagnosed me) for the pain. The fatigue obviously they can't do much about.

Reply 27

madders94

Original post by CHAZAA123

I was diagnosed with M.E (not CFS like most people) just an idea but have you had a look on AYME? Full of lots of information about M.E and pacing, diet, medication, uni etc etc and yeah! just PM me if you want to talk?

ME and CFS are the same thing under different titles, ME is what the hardcore truthers who refuse to acknowledge a psychosomatic cause tend to insist it is called, despite the fact that there is no recognized pathology in muscles and in the central nervous system like the name would suggest. CFS is used by doctors, often with the patronizing tone that suggests they really want to say "it's just tiredness", and isn't any better than ME because there are more symptoms than just fatigue.

CFIDS is another one I've seen more commonly used, Chronic Fatigue Immune Dysfunction Syndrome - I think that's better because whilst it incorporates fatigue, which is one of the most noticeable symptoms, it also gives it a more medical edge, so patients don't feel they're being told it's "all in their head" - whilst the cause/maintenance may be psychological, the symptoms are physical and there needs to be some compromise on both sides towards accepting this.

Reply 28

sosotalk

I have 'Fibromyalgia with Chronic Fatigue Symptoms'

In other words I have C.F.S but have the fibro pressure points too so they gave a mixed diagnosis.