To those of you out there with mild spasticity, do you find that you are easily affected by stress or demands of daily life? How does it express itself and what tactics have you found to deal with it?
I am 34 and pretty new to a CP diagnosis. I'm trying to learn the balance of energy consumption and preservation in my daily activities. Since I am deemed "mild", hard to know what part is the CP and just "normal" fatigue. Tricky!
i'm 26 y/o & i find that i have difficulty with the things you mentioned. it has gotten worse over the past 10 years or so. i don't have any ideas on how to manage. i do poorly in that department. i am to the point where i think that part time is the most i really should work. i use a med called neurontin & love it.
Interesting you mention that about the fatigue worsening over the years. I find that there is no predictability about what brings the stiffness or fatigue on; things that never used to do so produce fatigue now. I used to run and do more challenging physical activity and did not feel quite the same way in the hips, etc. I know it could be age, too.
I tried Neurontin for spasms after a surgery and had balance problems. How do you find it?
I am 38 and I have mild CP on the left side. Until 3 years ago you would never have known but since then I have had problems with stiffness, range of motion problems, back pain and and hip pain.
I was sent to PT and got a whole rigement of stretches that believe it or not really do work. I have also been receiving botox injections that have helped with a dropped foot and hopefully with my latest problem of my foot turning in and my knee starting to cross over.
Fatigue is a huge problem for me!!!! I am always worn out after a lengthy walk anywhere and I have slowed down tremendously. I have been working with a personal trainer who is trying to get me into shape to help battle some of the fatigue and I believe that is starting to help too. My workout is VERY low impact but by taking before and after tests I have been showing some improvements.
Really a positive attitude and having someone to talk to helps the most. With that you have the power to overcome a lot of the fatigue problem that is being brought on somewhat by frustration alone.
Keep your chin up and your smile on! Tell yourself that you can beat the fatiuge!
Hang in there!
Your response raised some interesting points. Could use your help understanding a few things:
1) Did the doctors assess your case as mild? And on what basis? (I've gotten varying assessments and I am never quite sure how the doctors determine what constitutes mild vs moderate. All seems subjective to me and the effects certainly don't feel mild!)
2) Is it typical for symptoms that might not have been problematic before to become so later? I know CP is not progressive, so I wonder what causes this.
You are right that being positive helps manage some of the fatigue. I have had varying success with PT and find that sometimes the stretches make things worse. The weather certainly does affect symptoms and hope the warmth of the spring keeps things stable for a bit!
Sorry it took so long to reply. My case has been considered very mild by all doctors. I have only been getting attention now because of the change in status of everything. My limp was really the only symptom that was noticable to me, but now there is the back pain and hip pain and increased tightness/spasticity.
Its been two weeks since my second round of botox and I am seeing a great improvement with range of motion and it is making a world of difference in my stretching. I am feeling stretches in the proper places instead of the compensation areas. Now that the muscles are loosened up I am going to work on strengthening them and hope the botox will offer some more permnent results. It is not a cure all but it sure makes a difference in my walk, the fatigue etc.
I very much agree with you that things are much worse during cold weather!!!!! 100x worse. I get more of the stiffness which brings on a much worse limp.
I have been gathering some of my muscle mass back with the strength training with the botox. NOT A LOT. It is only slightly noticable, but I have only been getting botox since January of this year so that is a huge milestone. I would ride my mountain bike all summer and not see any change in the leg muscles .
I was wondering if some kind of water therapy (water exercises) would help with the stretching since it might make things a bit easier.
Well its been nice talking to you, I hope this was of some help. Keep in touch.
Sounds like you have had better luck with botox than myself. That is awesome! I had it done to my calf and foot last April and got nothing from it. Ended up having surgeries to those areas (FDL tendon and toes) this past Feb.
If I may ask -- is the mild spasticity affecting the joints to the extent that surgery will ever be necessary? This had been the case for me and I began wondering just how mild my spasticity was/is.
My adductors and hip flexors are especially tight, though it is possible that this is partly due to my new gait and subsequent effects on the muscles.(Had three major foot surgeries in the last three years). Takes the body a bit to adjust. The PT felt lots of resistance and I had an MRI done last November since the flexors were not easing up at all. Sleep w. heat packs.
Like you, all the walking and biking at the gym and outdoors do nothing to add bulk to the right leg. My left calf is benefitting!
Water therapy has helped me alot. I swim and find that the kicking has helped loosen the ankle joints and strengthen the legs. The hips can be sore after, especially if I use flippers for extra power. I did water therapy as part of my original gait training and it has been a mainstay of my exercise regimen. Give it a try!
Try Pilates too for core strengthening. It has done TONS for me! I do the Stott mat method, but there are lots of different methods.
I hope not to need surgery but we shall see. 9 months ago I had a normal x-ray with that hip but I still get a lot of "popping" and some other feelings in my hip that aren't good. They mostly get dismissed when I mention them (symptoms).
I think my hip and lower back on left side are going to be a continual problem no matter what I do.
Today for example I was doing well. Botox has straightened my walking to almost normal. Then as soon as I got stressed out over something I started getting the hip pain and the quad spasms and the lower back pain flaring. Fortunately the walk stayed controlled but I could feel the resistance there.
Rain/storms get things worked up for me to not just cold. How about you?
My PT teaches pilate classes. She didnt even give me a chance to ask but told me they would not be good for me. Could you explain what they are to me? And can you tell me the difference between "tight" muscles and spasticity?? I am not clear on the difference.
But hey I hear you on the heating pads!!! I use mine quite often.
Well gotta get off here. Hope to hear from you soon.
Yep, the dampness definitely does not help matters. My legs and hips react pretty strongly. It is amazing how easily the body reacts to any change or trigger. Stress is a huge one almost all the time, and wreaks havoc on my energy.
Why did your teacher say that Pilates is not good? I am curious, especially since there is a huge component of neuromuscular training involved. Pilates is a method of exercises aimed at strengthening the core muscles (hips, abs, back) and strong core muscles help with posture and fatigue. Even better, the method of exercises requires mental concentration to make mind-body connections, which is key for us to get the brain trained to communicate more effectively with the body. Flexibility and strength are emphasized. In total, all good things.
As for the true clinical difference between tightness and spasticity, I am not entirely sure. But, as I've learned from experience, I know that constantly tight muscles in CP are the result of persistent contractions in the muscle, which is essentially what spasticity is. A muscle's purpose is to lengthen (relax) and contract (fire) and a stretch is intended to hold the muscle in the lengthened state. Spastic muscles tend to resist a stretch; the muscle fights the stretch by constantly contracting. Over time, muscle fibers that are constantly firing (contracting) eventually take on that shortened state as its new normal and the effects are contractures. The spasticity causing tightness in CP is the result of faulty circuitry in the motor centers of the brain signaling the muscles to fire when they should relax. Terms like "clonus" and "hypertonicity" are often used by medical specialists to label the type of tightness they feel. The clinical process involved here is very complex, but this is my basic understanding in laymen's terms. Hope it helps!
I am doing what I can to combat the hip and quad pain. The learning curve has been huge for me!
Thank you so much for that very good information!
I will have to look into the pilates again I think.
Sounds like we have quite a lot in common. It's nice to find someone who knows what I am trying to say and can give me some good advice. Thank you very very much!
You are very welcome! I am glad the information can help you. I let myself be a sponge with my various docs and absorbed some then looked up the rest.
Definitely look into Pilates again. I do the Stott method and like it very much. Key at the beginning is to work with an instructor to learn the proper alignment and breathing. Don't be discouraged either if it takes a bit for the body and mind to connect. It is just the way it is. Once you do, you'll find yourself thinking about it automatically.
It does sound like we share similarities, though you definitely did better than me with the botox. I am at a transitional point now where I am trying to shift from the intensity of being a patient for three years to learning how to live like a "normal" person with mild CP (putting it in perspective). It is mentally very tricky. I also never know when the body will decide to act up again so I fear more ortho work always looms.
Are the docs pretty encouraging that you can get by with exercises to manage the hips, etc? Hoping so! What are their thoughts?
Actually who knows if the botox is all it should be for me. I have been running on my own with this whole thing and my PT can't decide weather it helps or not.
Not sure if she is only seeing my good days or what.
I can't really get my docs to tell me anything. What I mostly hear is "that will happen as you age". I am trying to prevent further complications for when I truly do get old. I had a great day yesterday and today is a horrible day. Botox working?????
It's a shame that adults don't get more help than they do for this problem.
Have you ever actually seen a neurologist to discuss any of this as far as long term???? I have never had that opportunity but think it might be worth while. I really don't know a whole lot about what is going on with me and it is very frustrating.
My PT thinks working out is a good idea to keep the range of motion from getting worse and my primaary doc said it was good for me all around. I worry about my knees and hip as far as the joints themselves go.
Please do pass on any and all info that you may find out and I will do the same.
In the mean time I will ask the personal trainer I was working with about a pilate workout.
I am surprised the botox did nothing for you. What exactly did you get out of it? It did absolutely nothing? Interesting. I am still in a debate over getting the hamstrings/adductors again or just the lower leg.
Well I am rambling here.........but it is so very nice to find someone of my age group with a mild CP and only one side. And no matter what I will have my mountain bike out soon. Waiting for weather to warm up.
I like my team of doctors and they have had great discussions with me. My foot ortho has really been a great support and has helped connect me with the right specialists. My endocrinologist is the same. Problem is, no one really knows what to make of certain things. I'm told that I am doing all the right things with exercise and that it is hard to tell what to expect. I saw a hip ortho in the fall and had an arthrogram MRI done because my hips were very painful and not responding to anything. He said any intervention he'd try would make matters worse. I've managed to compensate well and undoing that could incur more risk than benefit.
I did see a neurologist last fall and did not get from it what I expected, other than a new diagnosis of spastic diplegia vs hemiplegia. He said there was little he could do and thought I was too mild for botox (go figure!).
You are right -- adults are kinda on their own with this and it is frustrating. We don't have the typical hip problem where a certain protocol can be followed. So much is available to kids (which is great), but no one knows how to deal with adults, especially mild ones. (and each mild case is very unique!)
Also, I've had many PTs in the last four years and not one of them really knows much about treating CP. My recent PT, while good at typical ortho injuries, finally conceded that he rarely sees a case like mine. We have no way of telling whether I am progressing or what is "good enough." Really hard to gauge.
The botox peaked last May after 6 weeks and I got maybe 1 day of relief. The toes still curled and the calf began cramping later last year. I spent the better part of last year at various specialists and can honestly say that I am completely burnt out now. All of this parallel to looking for a new job and trying to change careers. Again, the teetering between managing the CP and "pretending" that I am normal with the stresses in life we all must face.
I just threw myself into researching CP and spasticity from the get-go and armed myself with as much knowledge of anatomy and physiology, esp with respect to CP and the foot. It also helped that my ortho had fellows and residents in the appts and I learned over and over again about my case so I had oppts to develop my knowledge. I established early on with the docs that I was very serious about getting through this all with maximum benefit. I went in with a positive attitude and maintained it throughout. It was important to me that I was considered a team member vs a "case" and this has gone a long way to getting the desired outcome.
Do you have foot issues as well? Or, is it mainly the hips/back/quads? I had that last June and went through a round of myofascial release therapy. I'd researched it and my doc encouraged me to try. Did not quite work for me but it has for others. Like you, I began having problems going a mile and my posture was awful. It is entirely possible that gait changes due to botox contributed. Also, I have a leg length discrepancy which contributed to the back pain (something to inquire about). My foot ortho noticed it and rx'd a lift in my shoe. Seems to have helped. The harsh weather change in September set off another round of hip pain. Then the past round of surgery and compensating with the left leg.
I guess the ticket is surrounding yourself with knowledgeable and resourceful people who are willing to go the distance. It took me about four years to find it and the rewards have been fabulous.
I cannot wait to get to biking outdoors again w. my husband. He got me a mt. bike for Christmas and it has been my motivator to recover!
Sounds like you see a great group of docs!!! Good for you!
I don't have too many foot problems. I had my achilles tendon cut and lengthened in the early 80s to battle the toe walking. Then as a result of that is when the muscles in the calf started to deteriorate. A couple years after the tendon cut I had to have bone spurs removed from the front of the ankle joint due to the bone being wore away with the increase in rotation.
I must say though that my foot has had some mild cramping lately but nothing severe. My toes do not curl in infact I have limited movement period of my big toe. I cannot do toe raises on that side either. My balance is poor as a result too. Have you always had the foot cramping or is that something that progressed over time?
I have no idea what myofascial release therapy is, can you tell me more?
My PT thought about a lift in my shoe but then thought I may not get the right benefit from it.
I think my CP may be a bit milder than yours. My pain is not dibilitating, but it is enough to make me stop and rub my back or my leg and I get tired easy. I don't think that my problem should be ignored though just because I am not screaming in pain. My objective is to prevent injury and insult to my good side and to slow down what is inevitable for the future. I get told I am overreacting the problem but I really don't think so.
I think there is a real issue when you get cramping pain in the quads and the hip needs to have some heat applied. What starts out little now could end up a monster in the end and I will do everything I can not to let that happen.
Do you do regular stretching???
Do you have any problems with your arms?? I get occasional tremors in my left arm during stress and cold. And although my hand does not stay this way under stress it has over the last few years wanted to favor a closed "clenched fist" posture. How about you?
I just want someone to tell me I am not imagining my problem.
My husband got a new mt. bike last year. We took them out on a 28 mile trek through some pretty countryside and I can't wait to do it again. I may go out west this summer too and the bike will come with me.
Thanks again for all your knowledge. You have no idea how much it helps.
Sharing this way with you is also very helpful to me. Like yourself, it is nice to be able to "check in" and compare experiences and symptoms. I don't know too many people around that have CP, especially not in the mild form. We live in a culture where this is a stigma so I don't say much to anyone.
Sounds like you've had your battles with foot stuff early on. Interesting that your problems started more in earnest after the ankle and Achilles work. How many lengthenings have you had done? What was recovery like for you? As a result of a tendon transfer three years ago, I have little dorsiflexion. I thought scar tissue or something collected in front of the ankle, but it is probably just the tendon crossing the joint. I wore splints and stuff as a child and for the most part, got away with orthotics for most of my life. Never got a dx or anything so no one really knew what they were treating.
The toes really only started to curl after my second surgery when I was in casts for three months. Originally, my ortho could not determine whether scar tissue from the surgeries or a neuro issue was causing it. He hoped the toes would undo once I started mobilizing; not the case. Had them fused. The cramping really got worse after the botox injections and I have a tender spot at the site in my calf now. As my doc explained before this last surgery, the spasticity raises the baseline and he can only really treat problems as they exist right now. It is hard to tell whether the calf will get better over time or regress.
Don't ever think that you are overreacting from the hip and back pain. I know exactly what you mean because I am always afraid of the same. What I've learned to do is watch for patterns to see what brings pain about and for how long it lasts. If, despite measures of my own and time things don't progress, I call my doc and have info to report. Still, it is hard to consider what is "bad pain" and "suck it up" pain. Like you, I want to head off problems early on. Belittling a peron's pain is still uncalled for -- wish some docs could live in our shoes. They'd sing a different tune!
I am not entirely sure just how mild or moderate my spasticity is. It seems to depend on the type of doctor and the perspective. For example, my physiatrist sees the holistic picture and sees it as milder than most patients she sees. My ortho sees the effects of spasticity on joints -- contractures or deformities -- and has the task of fixing them.
My arms now are not a problem, but they were as a child. My right hand had a flexed posture and lots of activity and prompting from family helped me change it. I played clarinet, swam, bowled, etc. so the arm/hand got stronger. Fortunately, my upper body was always stronger and I've been able to develop it over time. How have you managed to work around it?
I have to stretch daily, too. It is a pain but I incorporate it into my exercise regimen. I've read that to really get the intended benefit from stretching you have to stretch for several hours a day. The periodic sessions are better than nothing, but not ideal. Wear a nightsplint to continue the stretch and used to use Dynasplints.
Myofascial release therapy is a type of massage. Myo=muscle and fascia=lining around muscle. The fascia is like the membrane on raw chicken and surrounds all muscles in the body (contiguous). When a muscle is tight, as with spastic muscles, the fascia is constricted and the tension pulls the fascia throughout. The idea behind the therapy, then, is to do manual work on tight muscles and "release" the tight fascia. In turn, the surrounding fascia will free up and the muscle can relax. Massage also brings oxygen to the muscle, which is missing in a tight muscle. The pain you feel in a tight muscle is it being suffocated. Manual work generates heat and opens the vessels to allow oxygenated blood. Hope this helps! (tip: If you try MFR, try to do it with a PT trained in it. This way, you can get it covered by insurance).
Yep, cannot wait to bike again. I cannot run anymore (my fave) so I need other outlets. A trip out west sounds awesome!