I have cerebral palsy and fibromyalgia

JadeB

hi all,
i have mild ataxic cerebral palsy. I can walk but have reduced power in my limbs. Have balance issues and also walk with a gait. However I have always worked and have an amazing job working with other young disabled people. However over the past couple of years I found myself becoming very fatigued and aching all over. This was normal from time to time but eventually my bad days became every day and the chronic ache never went away. My bladder issues worsened and my legs got weaker. The fatigue knocks me clean out. I manage to work part time but not much else. After blood tests, more physio, hydro and a rhymotology appt. I have been diagnosed with fibromyalgia. (Chronic pain syndrome.) has anyone else with cp also developed fibromyalgia. Doctors and physio think it may be a secondary condition due to having cp. 

Richard_Scope

Hi @JadeB
It looks as though you are coping with a lot at the moment. As you probably know that as we age people with CP experience a certain amount of physiological burnout. This is thought to be because of the strain we place on our backs and limbs when moving.
I do not have fibromyalgia and I am unaware of it being considered a secondary condition to CP in the same way that arthritis sometimes is. I know that a member of the community @littlemissinnocent has experienced something similar in terms of pain and fatigue. 

littlemissinnocent

Hi @JadeB, I am in no way an expert, but I am happy to talk, or try and help where I can. Personally I was not aware of fibromyalgia being linked to CP. But, I have been more achy, and had more pain as I have got older, and do find I have periods of being really tired. I have arthritis as well, which is, I believe, a known secondary condition. If I can be of help, feel free to contact me.

JadeB

@littlemissinnocent sorry for the late reply I hope you are well. I have recently told my boss about the diagnosis and had to be signed of work for a week just before Xmas due to exhaustion. I can definitely say the way people are about ‘insivible illness’ has surprised me. My boss has been fine but some of the people I work with are far less understanding. And seem to adopt the ‘suck it up attitude.’ I remind them that I have a physical Disability and a chronic pain and still work hard x

littlemissinnocent

Hi @JadeB. It sounds like you are having a bit of a hard time at the moment. You can only do your best, and only you can fully understand what you are dealing with. I’m always happy to talk/ listen if it helps, but all I will say is try not to let the attitudes of others get to you, although I know that can be hard. Keep doing as you are, as it sounds like you are doing the best you can. No one can ask any more than that.

chris_brown78

JadeB said:

hi all,
i have mild ataxic cerebral palsy. I can walk but have reduced power in my limbs. Have balance issues and also walk with a gait. However I have always worked and have an amazing job working with other young disabled people. However over the past couple of years I found myself becoming very fatigued and aching all over. This was normal from time to time but eventually my bad days became every day and the chronic ache never went away. My bladder issues worsened and my legs got weaker. The fatigue knocks me clean out. I manage to work part time but not much else. After blood tests, more physio, hydro and a rhymotology appt. I have been diagnosed with fibromyalgia. (Chronic pain syndrome.) has anyone else with cp also developed fibromyalgia. Doctors and physio think it may be a secondary condition due to having cp. 

chris_brown78

JadeB said:

hi all,
i have mild ataxic cerebral palsy. I can walk but have reduced power in my limbs. Have balance issues and also walk with a gait. However I have always worked and have an amazing job working with other young disabled people. However over the past couple of years I found myself becoming very fatigued and aching all over. This was normal from time to time but eventually my bad days became every day and the chronic ache never went away. My bladder issues worsened and my legs got weaker. The fatigue knocks me clean out. I manage to work part time but not much else. After blood tests, more physio, hydro and a rhymotology appt. I have been diagnosed with fibromyalgia. (Chronic pain syndrome.) has anyone else with cp also developed fibromyalgia. Doctors and physio think it may be a secondary condition due to having cp. 

Hi jade I have cerebral palsy (hemiplegia) and I’m tried and in pain all the while with muscle and spasm pain I was also told that I have fibromyalgia / chronic fatigue syndrome, but I also have sleep apnea which doesn’t help I’m struggling at the moment with my depression I Was reading about cerebral palsy and post Impairment syndrome I found I’m struggling more as I get older I’m 43 now

Richard_Scope

Hi @chris_brown78
Good to meet you. I'm sorry to read you are going through a difficult time at the moment. Have you spoken to your G.P. about Baclofen (it is also available in tablet form) to manage the spasms and general muscle tightness? I have also created some information about CP and fatigue, which you might find helpful.

Teresa15

Hi JadaB

I have the same CP, mild form, can walk ect. I also have been diagnosed with Fibromyalgia. They say Fibromyalgia can be caused by trauma or injury. I have been trying to find people who the same as me or at least similar. I do wonder if the fibromyalgia sees my cerebral palsy as an injury to the body. I have always worked, done most of what I like, workout ect, however the pain is just debilitating sometimes. I’ve been researching what to do, I have found a Mediterranean diet, supplements and some light meds have helped. My one issue is I need a deep tissue massage for the CP to help my muscles and I’m down for days. I go through fatigue wide spread pain and other symptoms, it’s a very hard balance. 

If anyone should come up with anything that helps I’d love to know. I hope you are all well. 

Richard_Scope

Hi @Teresa15
Thanks for posting. Along with your fibro diagnosis, much of what you have described sounds like some aspects of Post-impairment syndrome. Your G.P. should be aware of this but sadly some aren't. It would be a good idea to discuss this with them and perhaps ask for a referral to the multi-disciplinary team at the Cerebral Palsy Clinic at UCLH

DanceDeb

Hi I have mild Cp, I too are experiencing lots of other symptoms especially for the last 10 years. 
I have more throbbing aches and pain in all of my limbs and joints, I have tingling in my hands and feet, I have sharp pains in my hands ablns less power. I am so tired needing more sleep which is difficult as I work 30 hours a week. 
I have got pip for help with cutting veg and cleaning which helps and cut my hours to 30 was 37. But I am still sleeping during the day at free days and weekends. 
Do you think I should ask if I too have Fibromylgia?

Alex_Alumni

Hello again @DanceDeb is it something you've spoken about with your GP before, or maybe your physio or neurologist if you have one?

I'd say it's always advisable to chat to a medical professional if you have any queries or concerns, particularly if something doesn't feel like 'normal' for you. 

Richard_Scope

Hi @DanceDeb
It is worth having a chat with your GP and asking for your B12 levels to be checked. Low B12 can cause the tingling in the hands and feet that you have mentioned.