Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

ME/CFS and POTS

laurapeachlaurapeach Member Posts: 99 Courageous
edited April 2020 in Disabled people
I have ME/CFS and I am waiting to see if I am going to get a diagnosis of Postural Tachycardia Syndrome too. I am fairly new into being disabled and sometimes struggle with realising how much I can no longer do. I have a 5 year old daughter and two cats.
Mum of one, I have M.E/CFS, POTS, Central Sensitization Syndrome and Joint Hypermobility Syndrome.

Replies

  • Ami2301Ami2301 Member Posts: 7,418 Disability Gamechanger
    Welcome to the community @laurapeach it is distressing when we realise that we can no longer do the things we used to be able to do, it won't seem like it now but it will get easier and you will learn to adapt. Pace yourself and take one day at a time :)
    Disability Gamechanger - 2019
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,923

    Scope community team

    Welcome to the community @laurapeach. How far along the diagnosis track are you for POTS?
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • janer1967janer1967 Member Posts: 9,068 Disability Gamechanger
    Hello and welcome to the community, I just wanted to say hi and hope you find the site usefule and friendly 
  • laurapeachlaurapeach Member Posts: 99 Courageous
    Ami2301 said:
    Welcome to the community @laurapeach it is distressing when we realise that we can no longer do the things we used to be able to do, it won't seem like it now but it will get easier and you will learn to adapt. Pace yourself and take one day at a time :)
    Thank you, I'm definitely still learning my limits and trying to pace but it's difficult when you have a kid who doesn't quite understand that mummy can't go to the park anymore. But we're getting there.Adrian_Scope said:
    Welcome to the community @laurapeach. How far along the diagnosis track are you for POTS?
    I saw my GP today who referred me to the specialist at the hospital - while I was there my heart rate went from 80-102 when standing and my blood pressure was low as well.

    janer1967 said:
    Hello and welcome to the community, I just wanted to say hi and hope you find the site usefule and friendly 
    Thank you, I've had a look around and it's been helpful :)
    Mum of one, I have M.E/CFS, POTS, Central Sensitization Syndrome and Joint Hypermobility Syndrome.
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @laurapeach and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I'm glad you have found the forum helpful so far.  It is a really supportive and friendly space as you have probably gathered already.  So please feel free to chat to us anytime and if there is anything at all we can help/support you with then you only just have to ask.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • veoksveoks Member Posts: 3 Listener
    Hi! I was diagnosed with POTS about 3 years ago. Feel free to ask me any questions :) Once I was diagnosed it was a massive relief to know what I had and treatment has helped manage my symptoms so I hope they will be able to help you. 
  • laurapeachlaurapeach Member Posts: 99 Courageous
    veoks said:
    Hi! I was diagnosed with POTS about 3 years ago. Feel free to ask me any questions :) Once I was diagnosed it was a massive relief to know what I had and treatment has helped manage my symptoms so I hope they will be able to help you. 
    Hi! Thank you so much. The consultant I got referred to reached out and offered to try and help remotely while all of this was going on so he asked me to fill out a questionnaire type thing and then we'd go from there.

    Would you mind telling me how you got diagnosed? At the moment I have a myriad of symptoms but the main one is my heart rate jumping 40-50bpm on standing and then not dropping much until I lie down again. 
    Mum of one, I have M.E/CFS, POTS, Central Sensitization Syndrome and Joint Hypermobility Syndrome.
  • veoksveoks Member Posts: 3 Listener
    edited April 2020
    No worries! Ah I am so glad you're consultant got in touch! I see Dr. Gall so if you have the same consultant he is amazing and gave me reassurance and confidence which had been destroyed by some doctors prior to that. 

    So my diagnosis story is very long but when I was 12 (I'm 27 now and I think 24 when I was diagnosed) I started just fainting for no apparent reason (but not everyone with POTS faints so if you don't please don't feel like you shouldn't get help or that you don't have it). Then I developed other symptoms like breathing difficulties, headaches, feeling like I needed to sit with my legs up and crosses (which I still do now), nausea and just a constant sick stomach, always needing to pee, getting really tired and struggling to sleep well but also not being able to wake up in the mornings, and then chest pains and palpitations. 

    So I went to LOADS of doctors and was always told it was anxiety or it was psychosomatic but I knew it wasn't and it just didn't explain it. I then actually had a friend who's mum had POTS and suddenly thought... could I have the same thing as her? So I read all about it and even tested my HR at home from lying to sitting to standing and the increase like yours was huge. So I went back to a GP and booked to see a locum one and she gave me a referral to Dr. Gall! 

    Literally the first time I saw him after about 5 minutes he said he was pretty sure I had POTS but would have to do a tilt-table and some other tests. I burst into tears finally having some validation and got the tilt-table and it was typical of POTS. I have been under the care of cardiology for about 4 years now and he also referred me to other people to see about headaches, gastro issues and bladder infections. He also went into looking at possible causes for my POTS which was really helpful.

    At the stage that I went to see him I was in bed about 22 hours a day, had to leave university and work and had basically given up about having any sort of future. It took time but now I am finishing my second year of university and working part time as well as in a serious relationship. I am not perfect but I am miles away from where I was in 2016 so I really really hope the same can happen for you. If you want to know anything else just ask :) I know it's a weird process and it's not very common so there aren't many people to ask about any of it!
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Hi Laurapeach,
    I was in a similar situation to you although my condition is different. I have spina bifida but had led a fairly normal independent life until last year. In February 2019 I was told I would soon lose the use of legs and will be fully wheelchair bound and the consultants estimated this would happen in the next 3months to 3years. On top of that my twin brother got diagnosed with cancer in May 2019 and lost his battle to cancer in June. I felt my world had turned upside and having to deal with losing the use of legs was overwhelming. I came on this site as a place I could express myself without being judged or people feeling sorry for me. I just needed to connect with people similar to myself. I’m not going to say it’s easy because it just isn’t but every day throws new challenges and you get through them. Yes it’s frustrating but you just find new ways of doing stuff you like. There’s compromises along the way but everyday gets a little easier and best advice I would say is, don’t give yourself a hard time. If you want to get mad, get mad, if you want to cry, cry, just get it out of system, then brush yourself down and crack on with the day ahead. Hope this helps and if you need to chat your at the right place on this forum. Lovely people.
  • laurapeachlaurapeach Member Posts: 99 Courageous
    veoks said:
    No worries! Ah I am so glad you're consultant got in touch! I see Dr. Gall so if you have the same consultant he is amazing and gave me reassurance and confidence which had been destroyed by some doctors prior to that. 

    So my diagnosis story is very long but when I was 12 (I'm 27 now and I think 24 when I was diagnosed) I started just fainting for no apparent reason (but not everyone with POTS faints so if you don't please don't feel like you shouldn't get help or that you don't have it). Then I developed other symptoms like breathing difficulties, headaches, feeling like I needed to sit with my legs up and crosses (which I still do now), nausea and just a constant sick stomach, always needing to pee, getting really tired and struggling to sleep well but also not being able to wake up in the mornings, and then chest pains and palpitations. 

    So I went to LOADS of doctors and was always told it was anxiety or it was psychosomatic but I knew it wasn't and it just didn't explain it. I then actually had a friend who's mum had POTS and suddenly thought... could I have the same thing as her? So I read all about it and even tested my HR at home from lying to sitting to standing and the increase like yours was huge. So I went back to a GP and booked to see a locum one and she gave me a referral to Dr. Gall! 

    Literally the first time I saw him after about 5 minutes he said he was pretty sure I had POTS but would have to do a tilt-table and some other tests. I burst into tears finally having some validation and got the tilt-table and it was typical of POTS. I have been under the care of cardiology for about 4 years now and he also referred me to other people to see about headaches, gastro issues and bladder infections. He also went into looking at possible causes for my POTS which was really helpful.

    At the stage that I went to see him I was in bed about 22 hours a day, had to leave university and work and had basically given up about having any sort of future. It took time but now I am finishing my second year of university and working part time as well as in a serious relationship. I am not perfect but I am miles away from where I was in 2016 so I really really hope the same can happen for you. If you want to know anything else just ask :) I know it's a weird process and it's not very common so there aren't many people to ask about any of it!
    Yeah I read that not everyone faints with it, I never have but I have always struggled to cope with heat and it has always made me feel dizzy and faint so I think I've had it for a long time, it's just since the M.E started all of the symptoms have gotten worse. I struggle to get upstairs, I have bad brain fog and short term memory problems, post exertional malaise from the M.E, problems with sleeping, night sweats, etc., etc. I have two A4 pages of symptoms that I have to update every so often when a new symptom turns up. I can't drive at night anymore as I find the bright headlights make me dizzy and confused, I struggle with noise and lights when I'm in what I think is a flare and other bits. I had to give up work in January completely as I just couldn't do it anymore. The difference when I stopped pushing myself to work was really good for the PEM but not so much for the POTS symptoms as I am still getting those quite a lot.

    I'm in touch with Dr Fulton, from what I've seen he's really good so I'm looking forward to seeing what he suggests/if he thinks I have POTS.

    Thank you so much for your reply. I was lucky with my current GP as if I ask her to refer me to places she generally will and is really open to suggestions from me about what I could have. It was actually several doctors at my surgery who were gently trying to persuade me it was M.E when I first started getting really bad fatigue and the other symptoms as at the time I was in denial it could be that, I knew it wasn't easily treatable and that it used to be the diagnosis you'd get when they couldn't think of anything else.
    Mum of one, I have M.E/CFS, POTS, Central Sensitization Syndrome and Joint Hypermobility Syndrome.
  • laurapeachlaurapeach Member Posts: 99 Courageous
    Rifi7 said:
    Hi Laurapeach,
    I was in a similar situation to you although my condition is different. I have spina bifida but had led a fairly normal independent life until last year. In February 2019 I was told I would soon lose the use of legs and will be fully wheelchair bound and the consultants estimated this would happen in the next 3months to 3years. On top of that my twin brother got diagnosed with cancer in May 2019 and lost his battle to cancer in June. I felt my world had turned upside and having to deal with losing the use of legs was overwhelming. I came on this site as a place I could express myself without being judged or people feeling sorry for me. I just needed to connect with people similar to myself. I’m not going to say it’s easy because it just isn’t but every day throws new challenges and you get through them. Yes it’s frustrating but you just find new ways of doing stuff you like. There’s compromises along the way but everyday gets a little easier and best advice I would say is, don’t give yourself a hard time. If you want to get mad, get mad, if you want to cry, cry, just get it out of system, then brush yourself down and crack on with the day ahead. Hope this helps and if you need to chat your at the right place on this forum. Lovely people.
    Hi Rifi7,
    I am so sorry to hear about your brother, I can't imagine how it would have affected you and to have that happen on top of possibly losing the use of your legs. You must have really struggled?

    I'm learning to live with it slowly each day, it is hard accepting that the life I had before may not be something I can have again fully but I am hopeful that I can get somewhat better. I may never be cured or 100% what I was before but I have everything crossed :smile:
    Mum of one, I have M.E/CFS, POTS, Central Sensitization Syndrome and Joint Hypermobility Syndrome.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Thank you Laurapeach. Hope is a wonderful thing to have. Once you have hope, anything is possible. I wish you all the best. 
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @Laurapeach. I have had ME for 7 years. Yesterday I completely crashed! I was playing computer games and all of a sudden it felt like the energy had been sucked out of me I hadn't even got the energy to press the buttons on my laptop. I am still struggling this morning but hopefully it will get better in a bit. I still struggle to pace myself but it doesn't seem  to have any affect on me anyway! A few weeks ago I was making a cup of coffee and I was struggling to find the energy to stir it! It is unbelievable how debilitating it can be. I don't have pots but I do struggle with dizziness. I think pots is quite a common symptom of ME though. 
  • veoksveoks Member Posts: 3 Listener
    Hello! Sorry it has taken me a while to respond. Your symptoms are exactly the same as mine! And the noise and light thing also... I so get it! I think it has to do with the fight, flight and freeze response also, when I hear any unexpected noise or anything it really affects me too, I also have pink tinted glasses which allows me to be in bright lights like lectures and the tube or on my computer also. It was quite the process to get them but they have given me so much back! I obviously can't say anything as I am not a doctor but from personal experience when my POTS was better controlled it really helped the cognitive issues like brain fog and memory so I hope the same will be for you. I still have my moments but it's not a permanent state anymore! 

    I hope it goes well with Dr. Fulton, he seems to be really good also. I am so happy he is still overseeing your care while Coronavirus is happening. The PoTS UK page also has quite a lot of useful information. I started doing things superrrrrrrr slowly because if I pushed at all I would just crash for days. It was frustrating but eventually worked. There are also Youtube videos for people with PoTS, EDS, ME which have little exercises you can do but of course only if your doctor says that's ok. Another thing is if you find showering really difficult, if you can do it sitting at least for now that made a huge difference for me as it would knock me out to shower! :) 

    I hope this has been helpful :) And I really hope you get answers soon, I think the investigation part is the hardest!  
  • laurapeachlaurapeach Member Posts: 99 Courageous
    veoks said:
    Hello! Sorry it has taken me a while to respond. Your symptoms are exactly the same as mine! And the noise and light thing also... I so get it! I think it has to do with the fight, flight and freeze response also, when I hear any unexpected noise or anything it really affects me too, I also have pink tinted glasses which allows me to be in bright lights like lectures and the tube or on my computer also. It was quite the process to get them but they have given me so much back! I obviously can't say anything as I am not a doctor but from personal experience when my POTS was better controlled it really helped the cognitive issues like brain fog and memory so I hope the same will be for you. I still have my moments but it's not a permanent state anymore! 

    I hope it goes well with Dr. Fulton, he seems to be really good also. I am so happy he is still overseeing your care while Coronavirus is happening. The PoTS UK page also has quite a lot of useful information. I started doing things superrrrrrrr slowly because if I pushed at all I would just crash for days. It was frustrating but eventually worked. There are also Youtube videos for people with PoTS, EDS, ME which have little exercises you can do but of course only if your doctor says that's ok. Another thing is if you find showering really difficult, if you can do it sitting at least for now that made a huge difference for me as it would knock me out to shower! :) 

    I hope this has been helpful :) And I really hope you get answers soon, I think the investigation part is the hardest!  
    That's okay! I know it can be difficult to read a lot and then reply as well. 

    I actually had an email from him last night officially diagnosing me with POTS. He's started me on 1200mg sodium twice a day and then in 2 weeks I have to start Ivabradine. Then if that doesn't work there's other things he wants to try as well. I'm definitely lucky he's still helping as I think it would have been at least 6 months before I could see him in person. 

    I've already got a bath board and grip rail installed from adult social care and they do make a difference, I still need to lay down for a while after cos of the ME but it definitely helps the dizziness and lightheadedness. 
    Mum of one, I have M.E/CFS, POTS, Central Sensitization Syndrome and Joint Hypermobility Syndrome.
Sign in or join us to comment.