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I think i could have CFS? Any advice would be greatly appreciated x

Posted , 9 users are following.

jessica75446
jessica75446

Hi,

My names Jessica, Im 24 years old and was generally fit and well. Im at university studying law and also have a 4 year old little boy, so as you can imagine life can be pretty busy.

Over the past 5 years various problems have arrose with no diagnosis after various negative tests. when i was around 20 i passed out quite frequently (at least once a fortnight) and was sent to see a nurologist where i had a tilt table test. this came back fine and was put down to possible slower blood circulation and nothing more was said or done. I continued to have these fainting spells even now although it has gotten a lot less frequent. In January 2014 i unfortunatley had a bleed on my brain after being in an accident, but all was well and it healed on its own. Since then I hae suffered extreme tiredness which i feel is gradually getting worse, but i have bared it. In December 2014 i was admitted to hospital with abdominal pains where i spent 3 days on morphine for pain control, i had ct scans, bloods, liver count, MRI  and an ultrasound done. All came back fine. I have since suffered aches and pains over my whole body on a daily basis, headaches and now have to wear glasses which are light sensitive (which i have never needed before). I also have stomach cramps and bloating and also acid reflux regularly, last weeek i had a colonoscopy and biopsies taken....again colonoscopy came back fine and just waiting on biopsy results. The next step is an endoscopy.

I feel like my life is on hold, and every aspect is suffering from my family to my education. yesterday i saw something about M.E/CFS so though i would check it out and the symptoms and suprisingly i felt everything seemed to fall into place. I cry every day to my partner about the pain im in and also the tiredness and how i feel my life has changed so drastically, Im so forgetful and have problems concentrating. No dr i have seen has ever mentioned ME but i really feel it may be a possibility. I do have a dr's appointment this afternoon to discuss this but i really do not know how to approach the issue after reading many drs do not like to diagnose people with this condition.

If anyone has any advice it would be greatly appreciated.

thanks in advance

jess x

0 likes, 19 replies

19 Replies

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  • jackie00198
    jackie00198 jessica75446

    Posted

    Hi, Jessica. I'm so sorry for what you're going through. One thing I've learned is that I have to advocate for myself. So if a doctor tells you or implies that it's all in your head, inform him that no, it's not. You have something physically wrong. I had to do this with two doctors I saw before I was diagnosed. The medical community is woefully uninformed about ME/CFS, and often end up blaming the patients for "imagined" symptoms. It might be good for you to get on the CDC or other reputable ME/CFS website, print out symptoms, and assuming they largely align with your symptoms, bring this to your doctor. If all bloodwork and tests are negative, go to an ME/CFS specialist. Infectious disease doctors may be your best bet. I assume you live in the UK? If by any chance you live in the U.S., I might be able to give you the names of some experts in ME/CFS.  Good luck.
    • jessica75446
      jessica75446 jackie00198

      Posted

      Hi Jackie,

      I have actually checked out all of the symptoms and have pretty much all of them, I saw a lady on another forum that did this and high lighted any symptoms she had and then took it to her dr. I easily forget things which makes telling my GP  my problems without writing things down difficult so this is something im going to be doing. I am from the UK and have had lots of tests already which are negative but i guess it will be a case of keep going back and telling them im not imagining whats happening to me sad its sad that this has to be done before anyone is taken serious x

  • wknight
    wknight jessica75446

    Posted

    I have been sufferring with this for about 8 years. The problem is that the dr has to eliminate everything else before they can send you to a specialist in CFS who can confirm the condition and in my case that took a couple of years. Fortunately my GP has other patients with the condition so recognises the symptoms. I went to see a consultant in Poole who specialises in CFS to confirm my condition.

    I have been lucky in that although it has severly impacted my work and I gave up for a time, I have never suffered any pain, but I have suffered with very poor mental function and I am a very bright person.

    The bad news is that there is no easy cure. This past 12 months I feel that I have turned a corner with the condition, but I have done it all myself. I cycled 20 miles the other day and when I started several years ago a Suduko puzzle, if I could finish it took 30mins, today its around 8mins, sometimes 5 mins on a very good day.

    I have made this success with sheer will power and pacing. I live on my own but I am not one to give up so I spent years in boom and bust mode which was very depressing. A year ago I started serious pacing, listening to my body and it has really paid off.

    It might be worth you trying to talk to another dr in your practise and see if you can find one who believes in the condition. Many are coming around. All practises have a  PPG (Patient Participation Group) contact them and see if they have anyone who takes an interest in CFS. Another route is to talk to the Practice Manager and ask if any of the GP's have a special interest in CFS, it could even be on the Practice web site.

    Don't give up but its a long road if you do have CFS

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