Hi, my name is Miss406! — Scope | Disability forum
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Hi, my name is Miss406!

Miss406
Miss406 Member Posts: 11 Listener
Hello all, I am new to the group so I'll write a quick introductory post!

First of all, I hope we're all well today and had a good day.
I suffer with Fibromyalgia, CFS, Asthma, Raynauds, anaemia and chronic headaches.

I am awaiting diagnosis for possible liver failure, Stage 2 Chronic Kidney Disease and PoTS (postural Tachycardia Syndrome).
I am also awaiting an appointment for orthopaedics in relation to back pain I've suffered for nearly a year and gained 5-6 stone.

I have to use a mobility scooter to go shopping but can manage around the flat just about okay, but I cannot stand for longer than 3-5 minutes because of back pain. I get dizzy a lot and have fainted without reason 3 times in these 12 months.


I am 36 years old and live in Northern England. I hope to make many friends on this group, particularly if you have the same kinds of struggles I do with the same conditions.
I am looking also for ANY kind of advice in regard losing weight when we can't be as active as others.
Thanks for reading and hello!  :)
Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 

Comments

  • janer1967
    janer1967 Member Posts: 16,428 Disability Gamechanger
    Hu and welcome to the community 

    Gosh you are suffering and I'm sorry you have so much to deal with 

    I will rag in a member who can suggest exercise for you @chiarieds can you suggest any suitable exercise 

    I can empathise I have been un wheelchair fir nearly 4 years and the weight gain certainly creeps up 

    Have a look in recent discussions as there is a recent post about weight loss 
  • Miss406
    Miss406 Member Posts: 11 Listener
    Thank you and I will do. I've just posted in the chronic pain section of this site too. My main problem is chronic back ache which apparently, the doctor is ''running out of options'' to treat. 
    Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 
  • janer1967
    janer1967 Member Posts: 16,428 Disability Gamechanger
    I would recommend seeing a chiropractor did miracles for me when I suffered with severe back pain 
  • Miss406
    Miss406 Member Posts: 11 Listener
    Could I see one via the NHS? I couldn’t afford to go private. 
    Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hello @Miss406 - & welcome to the community. I have the hypermobile type of Ehlers-Danlos Syndrome (hEDS), & whilst this is a genetic disorder, the pain some of us have has been most likened to the pain of Fibromyalgia, so I have a little understanding. Altho I haven't pursued a diagnosis, many with hEDS often have PoTS (my son & I certainly have orthostatic hypotension & have dizzy as a coot moments). I also have lower back pain which I've had since being a teenager.
    As far as exercise goes (& I'm a physio, tho haven't worked in this field for a long time), I do know that remaining as active as possible is important, yet with Fibro you need to pace yourself, & not overdo it.....so a little & often when you can.
    Here are some gentle exercises you would be able to try in sitting: https://forum.scope.org.uk/discussion/73345/gentle-tai-chi-qi-gong-yoga-videos
    Here's a link to the NHS website about back pain with a video of some physio exercises at the end: https://www.nhs.uk/conditions/back-pain/treatment/
    Hope some of this helps. :)
  • janer1967
    janer1967 Member Posts: 16,428 Disability Gamechanger
    I don't think you can get chiropractors on NHS they are usually private 

    Though it was years since I went and maybe things have changed 

    I had private medical cover at the time through my employer 
  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    edited June 2021
    Hello @Miss406 and a warm welcome to our community.

    I'm sorry that you're dealing with so many impairments, that sounds really challenging.  Are you coping okay emotionally?  Also, do you have enough support to help with daily tasks?  

    I can see you've already been given some brilliant advice by our members, and I hope the exercises recommended can in some way alleviate your pain.  I've looked at chiropractor referrals on the NHS, and this NHS webpage advises:
    Chiropractic is not widely available on the NHS, but it may be offered in exceptional circumstances in some areas.
    To find out if you can see a chiropractor on the NHS in your area:
    • ask a GP
    • contact your local clinical commissioning group (CCG)
    If you need hands-on treatment, a GP is more likely to refer you to a physiotherapist.
    So it's possibly a conversation worth having with your doctor or CCG.

    If you need any more advice, please just give us a shout.  And to get to know our members better, I'd encourage you visit our virtual coffee lounge where we like to have light-hearted chat and play games!

    Take care and I look forward to speaking with you again soon :) 
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  • Miss406
    Miss406 Member Posts: 11 Listener
    @chiarieds, Thank you for all the links. I did 3-4 months pyshio and unfortunately it didn't make any improvements to my pain or back problems. 
    I will check out the other links. I did suspect EDS at one point as I can click my shoulders in and out of the socket - Well, it feels like it as they click in and back in and I can also touch my thumb on my arm and it bends right back. 

    @janer1967, I think you're right. I did a quick google search last night and it said in very extreme cases do the NHS cover the fees of seeing one. I looked up at a few local places to me and the first appointment is something like £60-75 and unfortunately, that isn't something I can afford, so I'll have to wait for the NHS to provide me with the orthopaedics referral. I hope I don't have to wait much longer. 

    @Cher_Scope, Emotionally, I'm afraid not. The last two days I have been crying my eyes out from the pain and that escalated last night. I was really sobbing my heart out, my partner feels useless and also started crying because of the amount of pain I am in. My partner is my carer and he does do a lot for me. I am going to talk to the CCG about a referral to a chiropractor because trying to speak to a doctor these days is beyond stupid. I get to bed around 11pm-midnight and I am led awake, crying in pain until I eventually manage to fall asleep around 4-5am, and then trying to get up at 8am to call them is near impossible. 

    Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 
  • Tori_Scope
    Tori_Scope Posts: 9,644 Scope online community team
    Could speaking to a mental health professional help you to cope with the emotional toll your pain is taking do you think @Miss406? I'm glad that your partner is so supportive, but I'm sorry to hear it's affecting them too. Do they seek any support to help them cope? 
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  • Miss406
    Miss406 Member Posts: 11 Listener
    Could speaking to a mental health professional help you to cope with the emotional toll your pain is taking do you think @Miss406? I'm glad that your partner is so supportive, but I'm sorry to hear it's affecting them too. Do they seek any support to help them cope? 
    I’ve been waiting since February for an appointment. I guess these waiting lists are exceptionally long. My partner doesn’t have any support to help him cope, is there anything you can suggest? 
    Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 

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