Guys. This post has 2 parts: 1) Knees and 2) Toe deformity
1) Is it possible that PD can express itself through knee pain? I’m experiencing crackling and mild pain in both currently. Doesn’t sound like PD but when I survey my past, I’ve had several periods when these pains arose: get sent for X-rays and they always report as normal. Seems strange
2) The Main Event! Those of you who know me will be aware that I had surgery about 3/4 months ago. This was to fuse toes 2 and 3 which had become sort of L shaped! I now have a foot that has the fused ones sticking out straight and the big toe and two baby toes point down. Excellent 😂☹️.
In fact, I’m unsure of the dynamics involved but the ‘baby’ toes have now decided to permanently point downwards, Levadopa or no Levadopa. I’m concerned as I find it difficult to walk without being pain. I never saw this one coming for sure. I honestly cannot recall read ONE post about toe deformity and pain which surprises me as it’s becoming a real drag. I read a research paper that claimed 26% of PWP experience it compared to about 2/3% of the wider population. So how are everybody’s tootsies? 😂 if they’re bad whatcha doing about it? Sadly mine are so bad now on my affected side I see little option for anything other than a second bloody and annoying second surgery.
Would love to hear of others tootsie tales.
Thanks and a Merry Christmas to you all.
Written by
jeeves19
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Before I began taking carbidopa levodopa, the toes on my affected side would curl under after a few minutes of walking (dystonia). Carbidopa levodopa completely resolved the problem.
" a knee problem on the unaffected leg. But when I poked and probed and felt around it became clear what was hurting were the insertions of the vastus medialis muscle around the inner (medial) side of my knee. It also became clear that the entire muscle was sore and unhappy. That is the area shown in red on the illustration. This was particularly apparent out hiking when moving the affected leg forward. I was not swinging my arm on the affected side, and experimented with deliberately swinging it. Lo and behold the affected leg moves forward a lot more easily when swinging the arm on that side backward! Conservation of momentum. My muscle on the unaffected side had become unhappy due to bearing an unaccustomed load. "
Thanks Bear. Yes I too suspect some muscular/tendon imbalance. I’m paying to see a good physiotherapist tomorrow evening and hopefully she’ll be able to assess this possibility using her trained eyes and hands. Cheers for the insight.
That was the case for me too Jim but 7/8 years of intermittent ‘scrunching’ seems to have translated into a sadly permanent state of curled rigidity. ☹️😂. But thanks for your input.
It sounds like Dystonia but with classic symptoms confused by your surgery maybe. Dystonia is a presenting symptoms for young onset – YOPD – although it also can be a side-effect of levodopa. I’m a left side YOPD and had Dystonia in that foot pre-diagnosis. I now get ridiculously painful Dystonia in my right foot as a result of the meds. Clasically the four smaller toes claw under the foot with the big toe rebelling by pointing up. Hideously painful… put a bard sole shoe on asap helps. Xx
Adam, I’m so sorry to hear about your continuing problems. It’s not so good when one has surgery to help correct a problem, and then when the surgery does not fix it, of course, this would be really frustrating. My toes have all curled downward, which, I believe, is the result of PD. So, perhaps, irregardless, your tootsies would continue to curl downward. My knees have stiffened, and crackled many times over the years, and make walking difficult, for me. When I went to an orthopedic Physician a few years ago, he took x-rays, which showed that my knee cartilage was worn down to where it was bone on bone, in my knee joints. So, I have had injections of joint fluid, to help. I am trying not to go through knee replacement surgery, Good luck to you! I hope you get these problems resolved, to your satisfaction. Doug
Hey Doug. Thanks for stopping by with your usual dose of kindness and support 😊. We’re both in the wars eh? My list of complaints grows steadily but I’m told so often how well I look. I wish I felt as well as I look! I’m seeing a physio about the knees this afternoon. My gp reckons that I need additional surgery for the curling toes which of course would require me off my feet for many weeks which isn’t good for PD. I’ll have to weigh up the gains vs losses I guess. To add to this smorgasbord of misery, one of my root canals is aching and I guess I’m going to have to fork out a few hundred for a second procedure or have an implant (£2k). I’d like an implant but they’re so expensive here in the U.K.. That’s one of the drawbacks about living on an island: they know it’s difficult to go somewhere else!
Hi Adam, Yes, it seems like we go through similar problems! I had 4 root canals, about 3 years ago, and the Doc put in expensive bone implants, so that I could have tooth implants sometime in the future! Then the economy hit, where nearly everything has doubled in price in the last several years! So, now I can’t afford implants. I doubt if I’ll ever get them now. Oh well! One thing I treasure, Adam, is that, with this HealthUnlocked forum, we, as fellow PD ‘sufferers’, can commiserate and complain to each other, and, even though we are separated by the Atlantic Ocean, where you live on an island, we truly understand each other’s ‘miseries’, like no one else can, seemingly! I don’t get the support from Medical Professionals, family, or friends, like I do, with HealthUnlocked.com! Oftentimes, people, including Doctor’s, tell me I look good, and they don’t realize the impact PD has on me. In my overall family, we have 3 Doctor’s, a nurse practitioner, and a Registered Nurse, with a BSN degree. Still, I get my best support and understanding from fellow PD bloggers, especially on HealthUnlocked.com. One reason why I may look good, and move better than some people, at times, is because I have a daily exercise regimen! That takes away some of the rigidity that I get. Walking our dogs helps us, too! Good luck at the Dentist!! Doug
Left foot toe curling/spreading toes were my first presenting symptom nine or so years ago. The last few years it had been nearly impossible to wear closed toe shoes or socks due to pain. I also had a persistent problem with my right hip going out of place constantly. Several months ago I found the Good Feet store and dove into orthotic insoles. It has been a game changer. My hip stopped going out and I can comfortably wear any shoes all day now. My toes still curl under and the big toe points upward, but only when I'm barefoot. Much of the lower back pain is gone. I think it's from better gait and alignment. I had mentioned this foot problem to every doctor I'd seen and was told that wasn't a PD issue! It's what drove me to see a doctor in the first place. After brain MRIs and needle muscle testing, the PD diagnosis came to light.
Thanks for contributing. I see we were both dxed in 2015 and roughly at tye same age. It’s a dreadful disease isn’t it? I think one of the things that I hate about it is that there’s no way out: to begin with, you’re in this maze and are certain you can find a way out. But 7 years on I’m still in the maze. 😳☹️
I have the same problem with Toe curl. When I take my meds I can sit and watch my toes slowly straighten. As my left foot started bending inwards due to the PD, I now have a damaged left knee cartilage which I am seeing a surgeon about. Surprisingly he elected not to operate and is trying some alternative options first including various injections, physio, and insoles. I told him I had taken up spin class, and he said that was the best thing I could do to get things straight.
Seven years in and things are getting harder as predicted.
We press on. Merry Christmas! At least we are alive.
i have friends that had thier toe tendons cut to relieve birdclaw pain...i have gone as far as strapping my foot to a flat board and pressing my toes "straight"...hang tough.
I have the same problem with the toe curling. About 5 years ago I started the High Dose Thiamin protocol and it stops the curling caused by the Carbidopa Levidopa. Generally About 30 minutes after taking the C/L my toes start curling. I take 500mg of B1 (Thiamin hcl) and the curling stops in 10 to 15 minutes. It works everytime.
I am with you - it’s a miserable affliction to have sore tootsies on top of the other compromises that Parkinson’s blesses us with. However as recently as last week I discovered SoleBliss.com, a UK company who specialise in shoes, boots and trainers for the afflicted. I cannot tell you what a wonderful feeling it is to be comfortable and to be able to wear the gel toe separators as well, that undoubtedly help one to stand and walk in a balanced, normal way. Truly life-enhancing.
I know, the price brought me up sharpish but honestly, I have wasted so much money buying footwear in the hope that a bigger size with various insoles, bandaged toes etc., would work that to fall upon sympathetically crafted shoes was too tempting. They are good quality and the sizing is true to size. I rang them before ordering and the sweetest girl talked me through the process. I can’t tell you how wonderful it is not to have that sharp, jagged pain ricocheting up from my clawed toes or the imbalance in my stride. A game-changer.
I have hammer toes on both feet. I’ve had them all my life so not PD related but since PD the left one (most affected side) is sometimes painful as it’s sliding under it’s neighbor sideways. Podiatrist told me I’ve been wearing too small shoes and sold me some expensive ones. It’s helped some but the toe is still twisted.
Yours sound awful. Hope you can find some relief soon.
toe curling is my nemesis!! It’s affected my strong leg because limping! I use yoga sandals, no other shoes work at all. I use correcttoes if I must wear shoes. Also yogatoes. I’m considering getting the tendons cut on second toe. I have to walk very slowly not to limp. So much for fast walking ☹️
hi Jeeves, its the little things that are hardest everyone can see your bad walking but i find loss of hand dexterity very limiting.
I hv toe issues too, i visit a podiatrist to get my toe nails cut ( partly coz i hv lost strength in hands to cut safely) n she great a tips on how to help. I wear silicone toe spacers as L big toe is migrating left. R big toe had begun to go up but i do allot of tiptoeing n that helps. It making sure to flex them regularly. Podiatrist has also offfered to make inserts for shoes. May be worth a visit.
I hv found yoga n flexibility brilliant. I sit on v low stool to put shoes on so i hv to rise from low squat. Just one way of challenging yourself always.
I hv also found if shoes are too rigid i walk like i hv fins on my feet, i can not get any movement in feet. I wear soft running shoes mostly- v pliable. All limbs can be jeld down by a feather weight or so it seems.
I hv dry mouth n few teeth hv just broken so hv found Biotene toothpaste sold in boots chemist. Really helps. Mouth gets so dry at night i wake n find teeth stuck to gums n if not careful causes ulcers🤷♀️
Hi Jeeves: You asked for our stories so here goes... I hope this is helpful. At ten years from Dx, I too have all of the issues you listed. In addition, I have a pronounced bunion on my left foot and a neuroma on each foot in the nerve under each middle toe. Three years ago I hobbled along with a cane and lived on Aleve. Pain each day was 6-7 with severe spikes when I could not walk at all. And yes, what had become very weird walking, put unusual stress on my knee, hips and lower back. After a couple of tries, I finally found a Podiatrist who has been helpful: advised not only on shoe size but also brand and model. Doc recommended I buy sneakers a full size larger than I was then wearing; also get a wide rather than medium width. The toe box is key...the only one he recommended was Saucony Triumph. He then created a custom orthotic that had pressure points under each neuroma, eliminating the pain (somehow).
I soak my feet in a tub with Epsom salts 2-3 times per week. I use an electronic pumice stone (Amope) to control the formation of calluses since, if allowed to grow, calluses can cause further misalignment and pain. I keep mytoe nails cut, use yoga to work on strength and alignment,
This took about six months to get in place and seemed to help a lot, but I noticed that I was developing calluses at the very end of my toes on both feet; toes were continuing to curl under, nails becoming thick and misshapen. Doc said that I have a narrow heel so, in the larger size shoe, my feet were moving forward against the inside of my shoe at every step. He recommended I add ankle sleeves runnersworld.com/gear/g4045... to pad my heels so the heels would stay at the back of the shoe. Thought it would help me walk longer distances too and that has been the case.
When I started this attempt to problem solve, my feet had several "rubbed raw" areas. Curved nails broke the skin between toes (a bloody mess!) and calluses formed blisters under the dead skin. In addition to being just plain ugly (no pretty sandals for me!), it just hurt a lot and for hours each day. Now my feet have no open wounds....and while some of my toenails still have the appearance of deformity and that bunion is still there, my feet don't swell; there are no signs of inflammation and no pain walking. If I run around barefoot, and step wrong, the neuromas act up but icing for 15 minutes or so helps. I replace my Saucony Triumphs every 6 months and can switch to nicer shoes for a few hours without re-injury.
Unlike many of the issues we face, I found this to be a solvable problem that requires effort (and expense) on an ongoing basis to maintain but does not have to be seriously disabling.
Jane. This is such a generous and inspiring post. Thanks so much for the length of it and detail. Very helpful and it’s always good for the spirit to know that there’s somebody else experiencing a similar scenario to ones. I checked out the ‘Saxony’ and inferred that you meant Sauconay? I went straight to EBay and found a guy selling a new pair for £20. Naturally I went for them a n d Im now am a proud owner of a pair of Sauconays which wasn’t part of my plan ( this morning I’d never even heard of the brand!). Well done 👍
As you are in the UK ask your PD Nurse or GP to refer you to an NHS podiatrist. They helped me with custom orthotics and the only cost was the car park.
I have knee problems that I am still trying to resolve though. I got referred to a diagnostic clinic who said they didn't think anything was structurally wrong and my gait was probably the problem. The issue with this is that my knee is the main reason my gait is so poor.
Anyway, I might have had a minor breakthrough in an unusual way. I fell on the stairs landing fully on the left lower back. Only soft tissue damage but extremely painful for about 4 weeks and probably 8 weeks before the pain went fully (although I suffer lower back pain generally, it was the injury pain that went).
The odd bit - trying to pick myself up off the floor and checking that nothing was seriously wrong I realised something: the pain in my knee had completely gone, and aside from being careful with my back my walking improved significantly and I could bend it to lower myself (useful when you can't bend over). It remained pain free for about 3 weeks and as I noticed the back pain ease, the knee pain returned.
I have been referred to a pain management clinic now with the suspicion that the knee is 'referred pain', probably caused by a problem in the back. Probably not your problem and I don't recommend falling down the stairs to check but wanted to mention as you said x-rays come back clear.
Another excellent response. Thanks so much for such a generous reply. I’ll definitely be asking g do or the podiatrist referral. A good idea 👍. Cheers and I hope you have a nice Christmas 🎄.
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when to eat?
Husband's neurologist is weaning him off levadopa carbadopa to put him completely on pramipexol. 
Aikidodrummer
What PwP need is regular rigorous exercise motivations NOT more levadopa
Anyone suffered with Sinemet induced dystonia?
