Struggling with diagnosis and implications

Hi, I had ME type symptoms when a referral to a rheumatologist was made. While waiting for an appointment I got cancer, had treatment, and developed a lot of pain on top of ME. When the appointment came through the rheumatologist spent about 5 minutes with me and said I have FM and CFS and gave me a leaflet for a support group.

The pain has been progressively worse and now my joints are heavily affected, especially after my ovaries were removed 5 months ago.

An US scan showed synovitis so I paid to see a private rheumatologist rather than wait 4 months, in case it was RA. No inflammation markers in my blood, so it's "just" fibromyalgia with some joint swelling.

I don't feel like fibromyalgia is understood properly though, that it's a label applied to a bunch of people with huge variation in symptoms and causes. I don't know what it means to have fibromyalgia at all. Any new symptom I have is just attributed to FM - but of course, with cancer (and a high risk gene for a bunch of other cancers) I worry any new pain is cancer spread or a new cancer.

The gp treats me like a hypochondriac over everything.

I take codeine but am increasing the frequency with which I take it as the pain is getting worse. I'm on duloxetine which helps the pain but doesn't help depression which means I'm without anti-depressant since I want mobility most! I tried amitriptaline but it was impossible to wake up on it.

I just don't feel like FM is actually a thing and I hate not having an explanation, I hate that it's getting worse, and I hate that every symptom can be attributed to FM.


5 Replies

  • There are very real scientific answers for anyone who thinks Fibromyalgia is not real. It can be mild, moderate, or severe. It can be detected in highly sensitive imaging and other tests that are not part of the standard ones. These tests are costly and the NHS typically does not offer them to us.

    We are all struggling with the questions and difficulties you are raising in your post. It is not acceptable to be sent off with a couple of pamphlets about these illnesses when so much scientific knowledge is being published every day. There are news websites for people who suffer from Fibromyalgia and ME/CFS, where you can read what scientists are studying and what they are finding. Prominent and esteemed researchers and universities are spending decades and doing great work. Unfortunately, it seems the NHS doctors are not educated and properly informed about the illnesses or keeping abreast of current knowledge about them.

    Most of us have to seek out better information and then approach our health care professionals with a more informed idea of what they could offer us by way of treatment and symptom reducing medications, If you are being treated like a hypochondriac by medical professionals, when clearly you have good reason to be concerned that your new symptoms could indicate a return of your cancer, then maybe you can see if there is a different doctor who will be willing to discuss these things with you.

    You have a right to be taken seriously and you have a right to proper information and options. Unfortunately, for most of us these are not being offered but must be sought out and requested over and over and over again. This forum is a good place to start. There is also Ramsey's Disease forum here at Health Unlocked for sufferers of the illness some refer to as CFS or ME or CFS/ME or any number of other names. The name has been changed a lot, so don't be put off by that or think it means that it is not real. You are welcome to join that forum, or seek help from some ME charity websites such as the largest, which is the ME Association. They also have wonderful helpline volunteers at various times of the day and areas where people can post questions online, as well as a Facebook page. There are several other ME/CFS organisations and websites that I am sure will be helpful. Start on one and ask for links to the others. You should get lots of helpful support.

    I hope you find much more of what you need and want. You deserve it!

  • Welcome to the forum. I can't add much to Budgiefriend's excellent response. I wish that more NHS doctors would become more educated in what fibro is all about and how it can affect individuals.

    it is only natural after such a tough time and having suffered with cancer that your thoughts turn to the feeling that your cancer might have returned and is nothing to be ashamed of. I am dreading having to change doctors as I actually have a doctor who seems to have some understanding of fibro and actually believes in it as an Illness.

    As Budgie says there are some excellent sites out there especially American ones where there seems to be much more research carried out and understanding of the condition. A hypochrondriac you are not.

    take care and let us know how you are doing.x

  • I am so genuinely sorry to read this and I sincerely hope that you can find some resolution and relief to these issues. It is totally unacceptable just to be given leaflets and sent on your way, as there are proper medicinal treatments for Fibro, and although as individuals they do not work for everyone, you should have at least been offered some.

    It may be beneficial to book yourself an appointment with a different GP to ascertain what can be afforded to you in the way of medication. I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • Wow, thank you all for your kind and helpful posts :)

    I guess I need to just accept the diagnosis somehow, myself - as I think I'm constantly looking for another explanation, and one with better treatment! I thought I had Rheumatoid Arthritis because of the joint pain and swelling, which was almost good news as there is treatment for that which could reduce pain and increase mobility.

    I also have a lot of resentment about being like this after the cancer treatment. I had no idea my life would be so different, and have been in hope that a 'normal ' would come back. It just keeps getting worse though.

    I've changed gps a bit (it's hard to stick with one at my clinic). I only got duloxetine because I'd been reading online. I asked the gp if I could please have some medicine for the pain. He said there is no medicine for fibromyalgia. I got out a list I'd made from what people have said they take on the Internet, and asked which of them would be best for me. He reluctantly picked duloxetine.

    I think I will change clinics all together though. At the same time I wonder if I should just avoid all doctors altogether. .. other than repeats of my current meds.

    Thanks for the tips and support


  • Duloxotine works for me, but I also take tramadol and paracetamol during the day! My Dr is willing to listen to the information I bring when trying to figure out what meds are going to work for me and has referred me back to my pain consultant with regards to other options! (she openly told me she doesn't know a lot about fibro) I'm truly hoping that you can find a good Dr who will help you sooner rather than later!... Much love.... Ninja....♥♥♥

You may also like...