CP and spasticity

Catmomma

I'm 66 and have left sided Hemiplegia. For about the last 10 years I've had increasing problems with weakness/ spasticity on that side of my chest. I call it a 'wraparound' pain. I slump to the left, the pain goes down my neck, under the bust, over the shoulder and up into my head. My chest feels like concrete. I don't have the energy to eat or even have the energy to breathe??? I feel sick but avoid vomiting due to the chest pain. I'm also scared of getting a throbbing headache. These have been the bane of my life. Choking fits/dental issues are now part of the problem. Over the years, GP's and physio's have told me 'it's muscular' . I concede that stress plays a part, but muscle tension is part of my condition and is affected by tiredness and weather fluctuations.

I actually saw a GP recently. He wouldn't adjust my meds or make a referral anywhere ( I had an injection in March 2020 which was really helpful with this chest pain but this doctor said it wasn't needed. He said I should contact a Consultant from the Neurolgy dept at the local hospital as they don't like GP's to interfere with their care plans. I'm due an annual review very soon but it's always with the same nurse. She's very clear about scarce resources going to patients in most need and marks me down for attending the clinic alone and travelling by bus. I live alone and strive to continue having an independent mindset, but now I'm thrown by this awful chest pain and the thought of not getting any medical care or advice.

When did GP's lose the ability to prescribe meds? I don't understand and fear ever getting past this nurse and her scorecard. Any advice would be welcome.

Mary_Scope

Hi @Catmomma

Thank you for telling us a bit about your situation.

I am just going to tag our CP network we have on our community that may be able help and advise a bit better @Richard_Scope @Lucy_Scope and @SaraC_Scope. They also provide information and support to people with CP and their families too

Richard_Scope

Hi @Catmomma

Thanks for posting. Have you been checked for Costochondritis? Costochondritis is inflammation where your ribs join the bone in the middle of your chest (breastbone). It can cause sharp chest pain, especially when moving or breathing. It usually gets better on its own over time.

Lucy_Scope

Hi @Catmomma ,

I am a Cerebral Palsy Specialist.

I am sorry to hear that you are having a difficult time. It sounds really challenging.

You have done the right thing going to your GP. People with cerebral palsy can experience post impairment. This is the result of having cerebral palsy and the stress it can have on the body. I suggest referring to the NICE Guideline when asking for a referral to Neurology.. Some GPs do not know this guidelines exist. The guidelines state that:

"Refer adults with cerebral palsy to a multidisciplinary team experienced in the management of neurological impairments if their ability to carry out their usual daily activities deteriorates."

With regards to your breathing, you should request an MRI for further investigations. You can also call 111.

Best wishes,

Lucy