Looking for advice

I am working my way through the NHS system towards what I think could be ME/ CFS.

My hands and feet get cold very easily and I have noticed reduced power in my hands when this happens - does anyone else find this?

Pacing and keeping me heart rate down seems to be helping. I have also started on a ketogenic diet and taking a range of supplements. Currently housebound most of the time but feeling hopeful for some improvement- think I might be seeing a few small windows. Anything else anyone would recommend?

Just received neurology appointment any info on what to expect would be gratefully received.

Thanks for reading

15 Replies

  • Sounds like raynards syndrome to me, has the doctor ruled this out?

  • Main focus I think is trying to work out why my mobility and balance is so affected- just really noticed my cold hands the other day when I put the post up. is this common with ME?

  • I don't think that cold hands and feet are characteristic of CFS / ME, though my circulation has worsened since I've had the condition. I now have to wear socks in bed and slippers when around the house or i get chilblains.

    The neurologist who diagnosed me described the condition as though every system in my body had had a 'downgrade' and was no longer working as efficiently as it should.

    Neurologists are a strange bunch, I've seen four of them. Most are quite gruff and perform a series of standard checks as part of their examination of you. They then arrange tests such as an MRI and possibly an test where a specialist tests your nerves ability to send messages to your muscles (uses needles and electric shocks, doesn't hurt much but neither is it pleasant).

    Don't but surprised or offended if they mention stress to you as a possible cause. Around a third of patients that they see have unexplained symptoms, they can be just as frustrated as the patient at the lack of certainty of the cause of the symptoms, CFS / ME usually does not show anything on their tests.

  • Do you mind me asking what you're doing to alleviate your symptoms and how well they've worked. Its just I'm really struggling from going from a busy active person who helped everyone to being able to do very little- looking for a bit of hope

  • Hi, I've made some dietary changes to better control my IBS and, following a test at the hospital, I now don't consume anything with lactose in it. Avoiding alcohol is good as whilst it may give short term relief, it's easy to become dependent and it puts a drain on your system using energy you don't have to process it.

    I've made numerous adaptions at work over hours, location and flexibility. Having a ground floor desk close to the entrance is a big help. I'm working my way through a relapse at the moment but prior to that, I'd managed a year of part time work. There will be times though, when through no fault of your own, you're not physically or mentally fit to work.

    I try and stay active. Walking about isn't an option for me due to mobility problems but I respond well to swimming - it's about what works for you that and doesn't give excessive payback. The less active I am, the worse the pain gets and then I'm more prone to back problems.

    I take amiltriptaline tablets prescribed by my doctor to help with neuropathic pain at night as otherwise I get insomnia and phantom sensations such as the 'itchys and scratchies' from head to toe.

  • You describe the neurologists perfectly. They are quite offhand. I had same tests as you. What is the nerve conduction test for because I didn't ask at the time. I was just relieved the brain and spine MRI scans were alright. He told me a third of the people he sees have stress and depression and of the other two thirds half of them have unexplained conditions and the other half have physical conditions which can be diagnosed. I was told to consider antidepressants and referred back to the GP. Have you ever been to a CFS clinic. I went to the one in Liverpool and it was very good.

  • Hi, the nerve conduction study I think helps to diagnose MS or detect some degradation in your nerves sending the messages to your muscles - it wasn't properly explained to me but when you've got numbness, weakness and coordination problem they seem to recommend it.

    I was referred to the CFS clinic in Seacroft Leeds and saw them for a year. They weren't fully staffed and didn't have a physiotherapist or pyschotherapist. They also don't advise on mobility problems or adaptions to your home, won't help with providing information to employers or DWP etc. It's​ certainly not a one stop shop. I use the 'Kings Speech analogy' - it's quite good but essentially it's just two people talking in a room.

    I had to see the Neurologist again to get referred to a Physio who in turn referred me for a home visit to have grab rails etc.

  • Yes the Liverpool clinic was ran by occupational health nurses and basically it was talking therapy. You never got to talk to other sufferers because it was one to one talking in a small room. I went for about 9 months and basically they taught you common sense regarding pacing yourself. I made a bit of progress after I was discharged but the wham it came back with a vengeance and that was the end of life as we know it. Don't know about you but I don't feel as though the medical profession really understand what we are going through. I have had little help from the GPs. As regards DWP I tried to claim ESA but was deemed fit for work so decided to try going back on a part time basis but never got further than the first week. Couldn't do the job so they eased me out slowly and that was that. Can't say I blame them because I had been off sick over 6 months with no sign of recovery.

  • I'm sorry to hear about your story. I changed doctors surgeries early on in the process as I was being dismissed with stress, the new bunch have for the most part, been straight talking and pragmatic, even admitting where medical science lets us down.

    I know of others who have running battles with their GP over whether ME exists and partly that's why I started the thread as the problem of semantics might be getting in the way, though a sensible GP wouldn't engage in an argument that served no purpose.

    Edit: you might be eligible for Personal Independence Payment (PIP) but that's worthy of a thread in itself.

  • My GP is alright but has the get on with it attitude which is fine if you are able to but some days I feel as though I will end up housebound and that's what scares me.

  • Hello,

    I noticed in your reply that you mentioned you've been to the Liverpool ME clinic.Is that the one in Broadgreen Hospital?I've been told that if the Gastro consultant I'm seeing in May can't diagnose me then I'll be referred to the CFS/ME clinic. I've got some sort of cold/flu on top of my fatigue at the minute and read some scary stuff about CFS online today so feeling pretty low :(

  • Yes it was Broadgreen. I went to. It is run by occupational therapists who basically talk and listen and teach you how to cope. You only get one referral on the NHS so once you have had the therapy you are discharged back to your GP.

  • I too get the cold hands and feet and lack of muscle power. Saw neurologist last summer. He did a physical exam and asked lots of questions and the did MRI on brain and spine which he said didn't show any sign of MS which I was worried about. I was diagnosed with ME in 2009/10 after numerous tests but the symptoms I get are wierd. Apart from fatigue which is the worst symptom I get lots of neurological stuff as well. Very strange.

  • thanks for you reply

    Do you mind me asking what you're doing to alleviate your symptoms and how well they've worked. Its just I'm really struggling from going from a busy active person who helped everyone to being able to do very little- looking for a bit of hope

  • Good Neurologist in Cardiff that I've been to with two patients. Believes in ME and is very caring. Now moving on to the Pain Clinic where they may try to run an ME Clinic as part of their work. Going with one patient on Monday, if I can wake him and get him out of the house in time to get there, always a big problem.

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