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A Bit Shocked Pain Clinic won't see ME/Fibro sufferers?

Discussion in 'Pain and Inflammation' started by Jan, Mar 8, 2017.

  1. Jan

    Jan Senior Member

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    Devon UK
    I've been researching pain clinics in my region and came across this under the heading

    WHEN NOT TO REFER TO PAIN CLINIC

    Patients being referred for symptoms of fibromyalgia or ME/CFS. Note: patients with fibromyalgia, ME/CFS can be seen for pain control not related to fibromyalgia, ME/CFS

    http://rms.kernowccg.nhs.uk/primary...iteria/pain_management/pain_clinic_guidelines

    I've never heard of this before, I thought a lot of Fibro patients went to pain clinics? I hope I can find one that will help me as the pain is becoming unbearable.
     
    Last edited: Mar 9, 2017
    Joh likes this.
  2. Diwi9

    Diwi9 Senior Member

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    USA
    Ah yes, what we see here is the ranking and medical merits provided to pain diagnoses. ME/CFS isn't even in the classroom, it's been told to sit in the hall.
     
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  3. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
    Jan, I'm actually not surprised by this seeing that this is in the UK. Everyone knows that FM and CFS/ME is all in our heads. :bang-head:
     
    Jan likes this.
  4. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Fibro is definitely treated by some pain clinics in the USA. Its sad to see this in the UK but not unexpected.
     
    Jan likes this.
  5. Snow Leopard

    Snow Leopard Hibernating

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    South Australia
    It's probably because the pain management techniques don't actually work for us.
     
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  6. Joh

    Joh Inactivist

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    So sorry, Jan!
    Does this even make sense or is my English too bad - so you would be allowed into the clinic if you claim, I have coincidentally Fibro and ME, but my pain is completely unrelated to these illnesses? :ill:

    Maybe Charles Shepard knows a pain clinic?
     
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  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Pain clinics can treat fibro pain, but I am less sure about ME pain. The problem is the two best treatments are either frowned upon or not legal ... strong opiates and medical cannabis.
     
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  8. Jan

    Jan Senior Member

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    Devon UK
    I was hoping to be able to try trigger point injections, especially for my arms. My arms have become weaker and weaker and I'm dropping things numerous times a day. I'm unable to open most packets now. I have great difficulty holding small objects, putting earrings in or trying to apply make-up takes ages and is very painful. It's agony trying to dry my hair and also using scissors, or even just clenching my hands. (It's the under side of my forearms that are most painful)

    I would love to get this pain under control to see whether the pain is causing the weakness, or if the weakness is due to either meds or another undiagnosed condition as it's getting rather worrying now.

    It feels like I have 'lactic acid' type pain permanently in my forearms, they are very tender to touch.

    The other treatment I was hoping to try is a nerve block type injection, I'm more likely to be able to have this treatment due to this pain probably not being caused by ME/Fibro. I suspected I may have meralgia paraesthetica (didn't tell GP though), GP referred me to Osteopath describing it as lateral radiculopathy. I saw the Osteo yesterday and he thinks it's possibly trochanteric bursitis.

    I am now dreading how long it's going to take to be officially diagnosed, it seems it needs to be diagnosed by a rheumatologist and an orthopedic cause also needs to be ruled out. Which leaves me in unbearable pain until then. The Osteopath wants to look over my details several times over the the next month, so I don't know if this means I can't be referred on until after this. He has given me some exercises to do at home, but says he won't be able to massage or manipulate the area as it's so painful to touch. This pain which started about 10 years ago has worsened over time, but bursitis doesn't appear to be a chronic condition and is more often on both sides whereas it's only my left side affected.

    I currently take Lyrica, Tramadol and Amitriptyline for pain, and I've also been using ibuprofen a lot recently. They are doing very little for either of these pains though.
     
  9. bertiedog

    bertiedog Senior Member

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    South East England, UK
    Fibro is definitely treated by the Chronic Pain Team in my area but it isn't hospital based instead its based in the community.

    I ran the local Fibro group for over 6 years and the majority of members who had been advised by the team spoke highly of their treatment. They offered not only drug treatment but also acupuncture and the Alexander Technique. Also their was a supportive psychotherapist that many of them found helpful in helping them to live with their illness.

    However they didn't ever seem to look at other issues that could be contributing to their illness even though I know one of the chief Nurse/Practitioners believed that from looking at research, hormone imbalances were probably playing a big part in many of their patient's symptoms (women were attending at probably around a ratio of 10:1. Because of the NICE guidelines they weren't allowed to address these.

    Pam
     
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