Hi, my name is clarehb21! — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.

Hi, my name is clarehb21!

clarehb21
clarehb21 Member Posts: 6 Listener
edited November 2020 in Cerebral palsy
I am 37  i have mild cp which I originally thought was just in both my legs and worse on my left side but after a recent appointment with my consultant I was told it was mild in my arms too I have also got mild osteoarthritis in my left hip ..as I've gotten older i have realised when I'm ill or on my period I get really bad spasms in my legs its starts off as a burning sensation down my leg then a full blown spasm in my leg is there anything i can do to ease this or is this something i have to live with? 

Comments

  • Tori_Scope
    Tori_Scope Posts: 9,644 Scope online community team
    Welcome to the community @clarehb21 :) I've moved your post into the cerebral palsy category

    I'll tag our Specialist Information Officer for CP in here, as I'm sure he'll be happy to try and help @Richard_Scope.

    Have you spoken to a doctor? Are you currently having any physiotherapy, or on any medications? 
    Online Community Coordinator, she/her

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us how we're doing? Complete our feedback form now.
  • janer1967
    janer1967 Member Posts: 16,410 Disability Gamechanger
    Hi and welcome I hope you get some advice from our other CP members 
  • clarehb21
    clarehb21 Member Posts: 6 Listener
    Hi Janer1967 thank you 
  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @clarehb21
    Good to meet you. Some women living with CP do experience an increase in muscle stiffness and spasms during their periods or when feeling under the weather. I would have a conversation with your GP and consultant about trying Baclofen to ease the spasms. I would also mention the burning sensation that you experience as this could be sciatica. 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @clarehb21
                             How are you? Firstly, welcome to the community and thank you for joining us. I can empathise with what you are describing and agree with @Richard_Scope that it is definitely worth having a conversation with your GP about trying Baclofen as this may help to ease the spasms. Also, please may I ask, have you tried a hot water bottle as I know this is something that I find useful, though given the burning sensation you feel it may not be appropriate. Please do keep us updated and please do ask any questions you may have, there are many lovely people here on the community and we all support one another. Thank you
  • clarehb21
    clarehb21 Member Posts: 6 Listener
    Thank you both for your comments it's much appreciated...I will get an appointment with my gp the burning sensation comes in my muscles just before the spasm is about to happen..I also have uncontrollable tiredness too which the GP prescribed folic acid which had no effect at all so it's all trial and error at the moment.

    Thanks again 
    Clare
  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    @clarehb21, lots of people experience increased tiredness alongside their CP, We have information about CP and Fatigue that might be useful for you to discuss with your GP. 

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,396 Pioneering
    No problem @clarehb21, please do keep us up to date with how things progress. Thank you
  • Eve53
    Eve53 Member Posts: 15 Courageous
    Hello! I also experience increased spasms during my periods. I have done a lot of searching but I have failed to find another women with CP who gets bad periods due to spasms. I was wondering if Richard could tell us more about women and CP?
  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @Eve53
    Anecdotally, there is lots of evidence to show that the hormonal changes in the body during menstruation can have a negative effect on spasms and general muscle tightness. 
    Cerebral palsy itself isn't thought to be a direct cause of heavy or painful periods but there is not enough research currently for us to be certain of that fact. 
    Scope is currently involved in a research project with the University of Birmingham called Eternal:: healthcare for girls and women with CP across the life cycle. Take a look.

      
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • clarehb21
    clarehb21 Member Posts: 6 Listener
    Eve53 I have always suffered when unwell and on my period & I have also struggled to find anyone else with this problem too 

Brightness

Complete our feedback form and tell us how we can make the community better.