Post-impairment syndrome

The enormity of what I have to deal with because I have cerebral palsy, just to be able to function in my day comes home to roost every now and again.

I am dealing with post-impairment syndrome that affects adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, in addition to their cerebral palsy symptoms, people will also deal with further symptoms including cerebral palsy fatigue, weakness, pain and arthritis.

The Institute’s report also states that on a daily basis people with cerebral palsy will use three to five times more energy than an able-bodied person, just to complete their daily tasks.

Because I have a reasonably good diet and have managed to exercise for most of my adult life, I am lucky I don’t have arthritis or pain, but I do struggle with weakness and fatigue, both of which are my biggest challenge. It’s this part of my life that I find so frustrating, because emotionally it’s difficult to let go.

It’s also not easy trying to adapt when you’re around others who don’t deal with fatigue or weakness. Anything we deal with around cerebral palsy, will not only impact on us because we’re dealing with it, but will also impact on family too as they try to conform and that’s not always easy.

I also have many concerns on how things will turn out as I age further, with knowing what I have to deal with now and it’s not sitting pretty.

26 Jul, 2014

18 thoughts on “Post-impairment syndrome

  1. Even though I don’t deal with CP, I kind of know how you feel.

    With Diabetes, unless I take good care of myself the future isn’t bright. I’m already having to deal with Neuropathy and blindness (even though the blindness happened partly due to pregnancy) and with Osteoarthritis, Fibromyalgia and chronic fatigue syndrome I deal with a lot and am not happy with it.

    I push myself daily to do what I have to do to. I also put my physical limitations in the back of my mind. I don’t listen to my body when it says, “stop, you need to rest!”

    I just keep moving on. I’m afraid if I slow down I won’t speed up again and really become disabled.

    1. Thanks Lisa. You do have a lot that you deal with. I see your point of not wanting to slow down, but you may not have a choice if you ever get to the burn-out stage.

      I would rather slow down and continue to motivate myself to do things when I am over the fatigue, than end up with burn-out and not get back up at all. To live in denial on what we deal with, isn’t good either.

      I have seen how life and what we deal with has a way of catching up with us.

  2. Hi I’m Mindy and I am 26 years old with Cerebral Palsy. I am tired all the time. I thought maybe it was my medications but I have learned it is the CP. How do I deal with this? Thank you. Mindy

    1. Hi Mindy and welcome to The CP Diary. We’re all different of course, I can only advise on my own thoughts, which I hope will help you. I took a look at my lifestyle to see if I could make positive changes to help with things like tiredness and the fact that I was dealing with CP.

      I would suggest taking breaks when you’re feeling tired and only do what you know you’re up to doing. I found that coming to terms and accepting I had CP went a long way to help me adjust living with the condition. I know that when we adjust, we’re more likely to know what changes we need to make. A lot of us who have something that we deal with, don’t always emotionally know how to accept that is what we deal with.

      I try to work within my own restraints of what I deal with. As with everything, it’s important to make sure the people in our lives understand exactly what it is we deal with and for them to be okay with it. Don’t feel pressurized into making decisions, which will take you out of your comfort zone.

      If you’re still struggling, make sure you’re not dealing with something else.

  3. I just found your blog and am so grateful that I have. I’m 37 years old and have both mild/moderate cerebral palsy and sleep apnea.

    My entire childhood, teenage years and mid-twenties I functioned very well, but over the last decade I’ve slowly begun to feel my condition more and more… my balance is eroding somewhat (e.g. I used to hop up on to curbs, but now cannot step up on to them unless there is a tree to grasp etc.

    When crossing the street, I can no longer walk through snow without falling, my stamina has greatly reduced, my blood pressure has shot up and I’m constantly struggling with weakness and fatigue, even though my sleep apnea is fully controlled through CPAP (monitored with a new sleep study ever two years, and with computer data collected by the machine every six months.)

    I now register in the normal range for sleep re: lack of apnea, and have been for several years now. But I’m on an antidepressant, anti-anxiety pill as needed, and a mild stimulant in the hopes I’ll exercise more. It’s circular: tired so less exercise so I remain tired. I can easily sleep 8-10 hours without forcing myself. Sometimes 12.

    Thankfully I don’t have much pain, although I do see a chiropractor every two weeks to check my hip alignment, neck and upper back, and use a mouth guard because I clench my jaw and grind my teeth. I pay $90 a month for the Chiropractor out of pocket.

    Thank god I live in Canada and have excellent health insurance, but it’s still a struggle, because I have no information on how CP manifests itself in adults. In fact, post-impairment syndrome is something I first heard from a high school teacher who was a polio survivor and who I know remember mentioning it might manifest one day in me.

    I only just stumbled on the term connected to CP today in your blog so forgive my sudden wordy email, but are there sites that you would recommend? How did you get to see a neurologist? Or should I start with a physiotherapist? In my case, I was diagnosed at 8 months to 1 years old, when I failed to sit up and reach other physical milestones. I have spastic diplegia technically, but it affects more than my legs.

    I was unable to walk until 5 years old when I had orthopaedic surgery to lengthen my hamstrings and release my hips… my feet were unable to flex and remained pointed so I could not stand and my legs turned inwards.

    Much physio therapy and ballet lessons later, I now walk unaided but with a noticeable limp. Thanks to piano lessons, I have full dexterity in my fingers and type like a champion, but my upper back and pelvis have very high muscle tension. I also suffered from severe pain during intercourse, which I only mention because no one warned me about that, which was devastating (but which I am now receiving treatment for).

    My experience overall is that so long as I am upright, smiling, and functioning in the broadest sense that I could hold down a job, (I’m a professor at a university). My physician and family and friends assume that there is nothing more to be done, but I’m feeling myself declining slowly, and it scares me.

    I’m afraid how I will or will not function in ten or twenty years. I need further medical guidance on how to be proactive, but I’m just not sure what referrals to ask for from my GP. So what sorts of specialists do you see? A Neurologist or a Physiotherapist? Anything else? I don’t know who would specialize in post-impairment syndrome.

    I would appreciate any thoughts you have and thank you for your wonderful blog.

    Warmest wishes… Heather

    1. Thanks Heather and welcome to the site. I completely understand your frustrations.

      I was told by one of my Doctors that past 18 years old there is no available help for those of us who have Cerebral Palsy. There is also very little information out there on how we will age with the condition.

      A Neurologist can only help if you don’t know you have CP, but once you have your diagnosis, there’s very little the doctors can do. Physiotherapy is available as an option, but probably something you will have to pay for.

      I believe lifestyle, diet and exercise will go on to play the biggest part for those of us with Cerebral Palsy. I know that without it, we will begin to struggle more.

      I think your family and friends are right. Apart from a healthier lifestyle there is very little anyone can do for those of us who live with Cerebral Palsy.

  4. Hi I’m 40 with mild to moderate hemiplegia CP.

    I can relate to what you have said in your blog! I have been back and too to my GP on and off for the past 5-7 years with fatigue, pain, etc (feels like influenza).

    I have blood tests which have shown a low level of Vitamin D, but that is currently under control and I still feel the same. Finally my G.P has referred me to a Rheumatologist, with the thinking I may have Fibromyalgia. Reading this, it could be post impairment syndrome as the symptoms are similar.

    Do I mention this to the Rheumatologist or see what they say? I don’t want to self diagnose, but something isn’t right. Any advice gratefully received.

    1. Hi Fiona and welcome to the site. If it were me, I would mention your symptoms to your new Rheumatologist and then hopefully you’ll be diagnosed on those symptoms.

      Hopefully with the right help and the right diagnosis, you will begin to feel better. I understand how you feel.

  5. Hello, y’all. I am 31 years old with Moderate CP. I am wheelchair dependent because of it. I am finding that as I age, my symptoms are surely on the decline.

    I recently found out that I have hip dyplasia and that is really taking a toll on my life in addition to the fatigue. I am using different varieties of pain medicine to cope with the pain. I am really trying hard to adjust to chronic pain, but it is tremendously hard to remain positive all of the time.

    Sometimes, it feels like no one understands, so it is nice to have found this community! I have an appointment with an orthopedic surgeon in October. I shall let y’all know how that goes!

    Please know that you’re not alone in this chaotic world and through this chronic pain journey.

    1. Hi Karla and welcome to the site. Yes I would love to hear how you get on in October. There are some days when I feel exactly the same. It’s not easy having to live with something we really know very little about, particularly as we age.

      Please know that you’re not alone. I hope that you’ll come back and post again. I feel it’s important to have support and be a support to others through our experiences.

      I’m pleased you feel my site gives you that.

  6. Ilana thank you for sending me this blog, even though it’s a few years later.

    If the Neurological diagnosis comes out to me having CP, there has to be post impairment syndrome! My body is so weak and I’m extremely tired constantly. It has affected my family, marriage, motherhood the whole thing.

    As these diagnosis come out, then we can all heal with more understanding, but as my husband says “these findings are just one more piece to the puzzle.”

    1. Thanks Bonnie. I hope you get to find out what it is exactly that you’re dealing with.

      We know that post impairment syndrome can be part of the Cerebral Palsy scenario, but until it’s officially diagnosed, it’s difficult to know for sure.

      Unfortunately, there are so many symptoms that we deal with as part of the Cerebral Palsy scenario. It’s a matter of finding a Neurologist who knows enough to help us work all of those things out.

  7. I am grateful to have found this site. After 51 years of undiagnosed symptoms (and a bad car wreck in the 90’s that caused everything to get way worse), I have finally been diagnosed with upper motor neuron syndrome, with CP being a good possibility.

    My Neurologist, who is an excellent diagnostician and is very well respected, is not the best communicator. After he told me what I had, he told me to come back in 4 months to see if I had a progressive condition or not. That was that.

    My emails through the hospital system tried to get information out of him, but it is like pulling teeth and I basically have not received much more information, than what I have shared here.

    I never expected this diagnosis, certainly, but all makes sense now, from the problems I had sitting crossed legged to my inability to have my hips be as flexible as the other kids etc. I now have hip problems in both hips and I had one arthroscopic surgery done last year but the arthritis is too far gone and my orthopaedic surgeon says I need a hip replacement.

    But they also tell me that spasticity will make the recovery and rehab process more difficult, which is exactly what I experienced with last year’s surgery. I think I will pass and just deal with it. I am still able to walk and go up stairs, so all is well for now.

    But, I am wondering whether there are questions I should be asking about the Mild CP? I guess I don’t even know what I need to know! I am already on Gabapentin and have been for years. That got rid of my migraines which is awesome and it helps with my other pain issues. I also take Cymbalta 60mg, Wellbutrin 300 mg and Lisinopril and a reflux med.

    My neck, back, hip and quad spasticity is getting worse though. I am in disability and can’t afford massages, but I am forced to go sometimes, two days in a row. Does anyone have a recommendation for treatments I could have for the spasticity?

    Thank you! I also suffer from depression and have been through very tough times after my divorce. If anyone needs a friend who can relate, just let me know!

    1. Hi Anne and welcome to the site. I know that when I first found out that I had Cerebral Palsy at the age of 46 there was no information to give me apart from the diagnosis.

      I’m not sure where you’re actually from, but in the UK unless you’re a child and are seeing a child Orthopaedic specialist, specialising in Cerebral Palsy it is very difficult to find someone who can talk you through your symptoms.

      I find that it’s important to keep moving so that your joints continue to work, (although I appreciate how hard that is) particularly as you also deal with pain, spasticity and arthritis.

      I don’t know about the meds you mention here. I take herbal remedies that generally help with keeping myself well. There are remedies that you can take for joints, depression etc. It would be a matter of trying to deal with the issue that’s the most pressing.

      I know some people who take botox to get rid of the pain through spasticity, but it’s finding out and sticking with the best solutions that work for you.

  8. Hi, I am just now seeing your post about CP and post-impairment syndrome.

    I went to see a neurologist with hopes of some answers, but I was disappointed. The doctor just told me I needed to lose weight and be tested for sleep apnea.

    Although that may be true, I felt totally disregarded in my attempts to explain my battle with chronic fatigue, increased tendonitis and anxiety. I have just recently turned 54.

    1. Hi, and welcome to the site. It sounds as though his attentions turned towards you rather than with the problem you came in for.

      My experiences show that neurologists don’t always have the answers we need. The answers we need should have been afforded to us as children. They’re not specialist enough.

      All you can do is take what information you have and continue to do your own research on the issues you want answers on.

      I understand and can resonate with you. Keep up the good fight.

  9. I have documented tendinosis and tendon tears with musculoskeletal ultrasound in cerebral palsy post impairment syndrome and have successfully treated these with platelet-rich plasma therapy injections. Although PRP injections do not always reverse the tendon damage they can aid in improving function, quality of life and lessening pain for many.

    Marc Silberman, M.D.
    New Jersey Sports Medicine and Performance Center

    1. Hi Marc and welcome to the site. I appreciate and thank you so much for responding on this blog.

      Sadly, many of the symptoms associated with cerebral palsy cannot easily be addressed but the treatment you describe sounds promising in helping the quality of life of those with this condition.

      I am sure your response will help many us understand a little more about this relatively unknown treatment.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Order my new book

Ilana x