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No point

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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Harry01, you mentioned gingivitis. Do you have a good dentist?
    Can you train yourself to brush your teeth with the arm that doesn't hurt?
    I can recommend Gengigel mouth rinse, it's aimed at problems with gums, including gingivitis. 
    Take care. 
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  • harry01
    harry01 Community member Posts: 217 Courageous
    Hi @Oxenlady I've got as far as I can in using my left and right arm to brush. But I cannot reach to press along the gumline around back teeth. From 2014 I have gone from being able to clean 40 percent of my mouth to maybe 80 percent. 

    I cannot say that my dentist is good as I have had this since 2017. They simply believed as did the doctor that I was physically able to do it. I've used mouthwash and as much as I physically can, interdents and floss but nothing replaces the mechanical action of brushing and along the gumline. Just as with the doctor I told them repeatedly what my physical issue was but they ignored me. 

    Thanks
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    How would it be if you used an electric toothbrush?

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • harry01
    harry01 Community member Posts: 217 Courageous
    @leeCal I use this too. Thanks. 


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  • Cress
    Cress Community member Posts: 1,012 Pioneering
    I'm sure I saw something about sonic tooth brushes, that work without having to be in contact with the tooth itself, still gotta shove it in there, obviously...

    Now if they were dentures...glass of water and a couple of fizzy tablets would sort you out...not really helpful, sorry...
    Hope you find a solution. 
    Must be maddening...
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  • Cress
    Cress Community member Posts: 1,012 Pioneering
    According to Sonicare...they work at a much higher speed agitating the fluids in the mouth to reach where a toothbrush cant ie between teeth, beneath the gum line and crevices....
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  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    Hi @harry01 - sending this as perhaps it might help. Just to let you know, I'm a physio (tho I haven't worked as such for a long time). Perhaps you may have been taught this, so apologies if you already know.
    Try standing with your left foot slightly (less than a couple of steps) in front of your right foot. Lean forward a little, putting your left hand just above your left knee to give you stability. Let your right arm hang down, then, using gravity, just move your right arm backwards & forwards. You can also try making a small circle with your arm. Don't increase this if it causes pain....just do gentle motions that you feel comfortable with. I've used this in many patients, which my colleagues did not. I've also 'used' this on myself with 2 episodes of a partially frozen shoulder.
    The key is not to do anything which causes pain, as this then becomes a vicious cycle, & causes more pain.
    Just to add, my right arm was damaged by another when I was about 20. I learnt to write very slowly with my left hand, but brushing my teeth effectively was one of the hardest challenges.
    As far as your penile pain goes, this needs addressing, as it must be causing so much distress. Please consider phoning your GP about this. No-one should suffer such a thing silently.

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  • harry01
    harry01 Community member Posts: 217 Courageous
    Thanks @chiarieds.

    Your advice makes sense. The physio I saw previously told me to 'push through' the pain. Um... 

    Thanks for engaging with this. 
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I imagine that didn't help at all @harry01! When I first went to the pain clinic I was told to accept my pain... because somehow that fixes it?! I hope your week has been good so far. :)
    Scope

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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Harry01 and Chloe_Scope, contrary to what some doctors and physios believe, pain is not a natural state for the human body. I know for certain that my body only complains with pain when something isn't right.

    It's just laziness, an uncaring attitude and lack of an investigative spirit among medical professionals that leaves many of us in pain. 

    Often they fail to investigate pain properly, it doesn't clear up and they then label it "chronic". It infuriates me because doctors just say they can't do anything about chronic pain! 

    Harry01, you have weakness as well as pain in different parts of your body so proper investigations are warranted. Please ask for the help you need and are entitled to receive. 

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  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    Well, some physios even hang around a certain internet forum trying to offer a little advice about pain (see above), but I agree it's not a natural state for the human body @Oxonlady

    @Chloe_Scope - this acceptance concept is part of 'Acceptance & Commitment Therapy' that psychologists & others have used for some time for those with chronic pain. The following full paper is eminently readable, & I related to several of the women's quotes. Please see: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671308/

    There are more up to date studies; this from King's College, London: https://pubmed.ncbi.nlm.nih.gov/27397934/ & this published last year: https://pubmed.ncbi.nlm.nih.gov/31200768/    etc.

    But being told to 'accept' pain without advice, is totally unacceptable!

    What also bothers me is people being told to push through the pain, as with @harry01 , whom I'm hoping will contact his GP about his other painful problem.


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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Sorry, Chiareids, my comments about doctors and physios are not personal, I have had some really bad experiences with both professions... 
    Just to give you one example, I kept saying, at one point, that I had Cauda Equina but absolutely no one listened. They just kept saying that I had chronic back pain. 15 months of agony later I collapsed and they operated, but they had left it so late that nothing below the waist works properly. This has happened twice! That's why I say that pain needs to be investigated properly. Sorry if I sounded harsh...

    That's why I've suggested to Harry01 to get a second opinion. 
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  • harry01
    harry01 Community member Posts: 217 Courageous
    @Chloe_Scope sounds bad. What do you suffer from Chloe? 

    I've been referred to some persistent pain clinic. I have left no information out and spoke to the doctor yesterday.

    I don't put a whole lot of weight on doctors, specialists or anyone. I think we don't know. I saw an appalling programme in channel 4 that if memory serves me correct said that 'chronic pain' was the pain system malfunctioning or something like that. I mean that would surely be complete nonsense description to conditions where the nervous system is doing it's job: reporting a problem. 

    Happy to talk about this. 
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  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    @Oxonlady - no apology needed; rather me apologising for some in my profession, & I am saddened to read about your diagnosis. You didn't sound harsh for one moment. Cauda equina syndrome is a dreadful problem, & I'm very sorry indeed that you weren't listened to.
    I was always politely listened to, but, whilst I was 'eventually' diagnosed with Ehlers-Danlos Syndrome (after I'd researched & found out what my family had), a neurological problem, Chiari 1 Malformation (which I thought our family also had), couldn't possibly be associated with this.
    It was later worked out by a USA geneticist that the chance of the 2 occurring in a person was over 3 million to one against, therefore there had to be an association.
    I spent nearly 10 years trying to raise awareness of this association here in the UK, backed up solely by a New York neurosurgeon. By a bit of synchronicity he had started to recognise Ehlers-Danlos Syndrome (EDS) in some of his Chiari patients at the same time I thought our family must have both disorders, & therefore this may affect others with EDS.
    Pain & everything else does indeed need to be investigated. When I started researching, it was more to find out about the severe breathing problems our youngest daughter had had. My eldest daughter asked me to look into this some 16 years after we'd lost her little sister. So yes, getting things right matters.
    On another thread I also suggested harry01 seek a 2nd opinion, & I am pleased he has spoken to a Dr. & is going to be referred to a pain clinic.

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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Hi chiarieds, I'm sorry to hear of the loss of one of your daughters, even if it was 16 years ago. As a mother myself, I know that the loss of a child is a hard thing to bear... Did your daughter have a respiratory ailment?

    I have terrible SOB but so far the doctors haven't quite worked out why. Some are telling me that I have heart failure and others disagree... 
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  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    Hi @Oxonlady - youngest daughter had severe breathing problems at birth, & had to have a tracheotomy at 1 week old. Her Drs didn't know the cause of her problems. It was only when I looked into this in 2000 (by then our son had a computer), that I thought this due to Chiari 1 Malformation. We had lost her in 1984, aged 23 months.
    I do hope you find out why you get SOB; you've had enough problems.
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    I'm sorry about the loss of your daughter @chiarieds That must have been a difficult time for you and your family.  

    @Oxonlady is your SOB still being monitored?
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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Hi Chiarieds, thank you for asking. I'm under the Royal Brompton hospital but I have not been seen since last year. I'm due to be seen in the next couple of months but so far I don't feel that they've taken it seriously enough. 
    I'm feeling generally very unwell, I'll mention it to the rheumatologist when I go to the hospital tomorrow. I can barely move... 
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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Sorry, Cher_Scope, my post above should have been addressed to you. I'm so exhausted, I can't think straight... 
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  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    Hi @Oxonlady - I'm so sorry you're feeling so bad, but am pleased you're seeing a rheumatologist tomorrow. My last rheumatologist said my neurological problems were worse than my rheumatological ones, & normally he would send me to his neurology or neurosurgery colleagues, but I'd already seen them. So he asked if he could give me a neuro exam, & found I had hyperreflexia (+ ankle clonus on one side). He even was able to elicit reflexes which are not normally present (& which no-one else had tested for). He concluded all 4 limbs were affected, & that it was obvious to him that my problems were therefore coming from high up, either from the neck or the brain itself. He totally believed, with our family's problems, that Chiari 1 Malformation was likely.
    I hope you see a rheumatologist as helpful & understanding as him. Please say how you get on. :)
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