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Natalie

I need some help!

35 posts in this topic

Hi everyone - I am 44 years old and was diagnosed with parkinsons 5 years ago. At the time of my diagnosis, my neuro. told me to become an exercise fanatic, so I did. About 14 months ago, I began having pain in my left hip/thigh area. I assumed a few days of not exercising and I would be good to go. Unfortunately that was not the case. The pain has now increased and is now at times through out my entire left leg. (my parkinsons is on my left side). Is extremely worse after walking and/or being on my feet for long periods of time. The worse being when lying down. Just wondering if annyone has experienced this and if so what did you do. I have had physical therapy, cortizone shots, chiropracter treatments, x-ray (hip looks good), MRI, have had a nerve block on my L3 disc and now have one scheduled on my L5 in July. This was recommended by the physical medicine rehabilitation doctor I was sent to. If anyone can help me, please let me know. I am so tired of being in pain.

 

Natalie

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One of my PD symptoms is foot dystonia, worsening with exercise. Exercise-induced foot dystonia may be a feature of YOPD and can be quite painful. Have you noticed an inversion (in-turning)of your foot in your ankle, and/or curling of your lesser toes with hyperextension of the big toe ? This is the usual presentation of foot dystonia in PD.

 

My advice is to ask your neuro if your pain could be due to foot dystonia (you could also ask our doctor Dr Okun).

 

Most importantly, make sure your pain is not Pd-related, before going into any invasive procedure! Had i been diagnosed with PD earlier i would have probably avoided two painful and unnecessary wrist surgeries...My first PD symptom was hand dystonia after a wrist fracture! No wonder why i was misdiagnosed...

Edited by christie

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Christie -

Thanks so much for responding - you described the foot dystonia I experienced prior to this pain when I was able to exercise. I am at my wits end - I cannot find any pain relief.

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You are welcome Natalie and welcome to our forum!

Your symptoms could still be due to dystonia involving the entire leg? Just guessing...

Is your pain constant ? Does it respond-even temporarily- to the PD meds ? Have you consulted an orthopedic surgeon and a movement disorder specialist (not just an ordinary neurologist)on your problem ? What's their opinion?

I'm afraid no patient can really help you with any advice on this. If your doctors can't find what's wrong don't hesitate to ask for other expert opinions, until you find your answers!

Keep us posted, and try to be positive and keep your spirits up!

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Oh yes....that's dystonia I'm very sorry to say. Use search terms dystonia and distonia and you'll find some of my comments on this worst of all symptoms of PD. I had it first in my hip or just below my waist on one side and it was in a very small specific location but exceedingly painful. Direct, hard pressure applied right on the ache felt good but as soon as the pressure was removed the pain returned. Eventually it moved to my bad left side elbow where it continues but now pretty much tightening muscles up and down my entire left side and particularly my ankle together with my chest. Was it you Lin who also was dealing with this horror a few years back? Fortunately if I put no weight on my ankle there is no or much less pain. Compression like when I stand up and put weight on the ankle the pain is insufferable...unbearable really. Ankle pain seems more joint related now and involves connective sinews which seem to grind and snap, crack, etc. One bit of good news is that for a long time mine proved to be quite responsive to L-dopa...Sinemet. Sometimes a patient's dystonia is responsive and with other patients it is not. As I contemplate DBS surgery the surgeons are telling me (1) DBS really doesn't do anything for dystonia or (2) we can help you alot with dystonia, particularly ankle problems with DBS. ......Go figure!..... Try loading up a time or two on Sinemet when the pain is fully flaired up and see if there is any reduction of its intensity. I'd be interested is hearing back what you discover.

 

You might try botox injections or muscle relaxing medications neither of which did much of anything for me. Several neurologists have diagnosed mine dystonia. It's bad stuff. Keep in touch. Thanks for posting.

 

Roger

Edited by Rogerstar1
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Hi, Natalie. I have a very similar tale to yours & Roger's. A few years before I was diagnosed with PD (which was 5 years ago), I started having pain in my left hip/thigh, and it's never gone away, just gotten worse & spread. Tends to get worse at night & keeps me awake. Like you, over the years I've seen many doctors, chiropractors, physical therapists, massage therapists, had tests, taken meds, etc., with no relief. After my PD diagnosis (due to tremor in right hand, now widespread everywhere), I thought the pain must be related somehow to my PD, but didn't know it was dystonia, and none of my doctors, including neurologists & MDS have ever said that, which seems strange given Roger's comments.

 

I have other pain as well & Sinemet does help with one of them, chronic serious pain near my right shoulder blade, which came probably 2 decades before my PD diagnosis. But Sinemet has never worked for my hip pain and it causes my right leg & foot to jerk, cramp, & curl, if I take more than half a low-dose pill. So I'm stuck. It's very hard. I find that if I put pressure on the pain center by lying on a ball that I got at a pet store (looks & feels like a very large tennis ball), or elevate the lower hip area on a roll bolster pillow & pull my knees up, I get some relief, but no permanent fix yet. If I wake in the night with pain, I take half a Sinemet & half a Requip & can usually go back to sleep. I take yoga, dance, aquatics, ride stationary bike, walk, etc., but no help. If anyone has any ideas, or you get an answer from your doctor, I'd love to hear what you find out. Good luck!

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Hi Natalie,

 

I have had the same exact pain you've described! Thee key word being "HAD"! I went through much of what you have, except for the nerve blocks you mentioned. OUCH!!!!! I went to my PCP (Primary Care Physician one day in excrutiating pain. He Rx'd pain rerlievers, which actually didn't come close to pain relief, and he also Rs'd a "new to me" type of physical therapy. "WARM WATER THERAPY". On my very first appointment the therapist found that the leg, on the side I had the terrible hip pain, was actually one inch shorter than the other leg! This is important because it was on my (at the time) non PD side. In all of my years with PD. the copensation for my ;eft side (my PD side) played an important role in the shortness of my right leg, and the terrible pain in my right hip. He had me lay on a table. After a few minutes of "manipulation", and a loud/audible pop. my right leg was "back in place". The only problem, other than no pain, I was just about an inch shorter! LOL! But that isn't the end of the story.

 

Next, and for twelve weeks, three times per week, came the heated water pool for my hip therapy. One hour of stretching and exercising in a 6' deep pool of water on the deep end down to 4' deep on the shallow end, heated to 96 degrees. Being the skeptic that I was, I couldn't believe that it would "do the trick". But it did! That was two years ago, and I haven't had a problem with my hip since! Nowadays though, and only in the summertime, I still do the same exercises in our daughters' in-ground swimming pool in her back yard!

 

So, IMHO, the pain I experienced was indirectly PD related!

 

I hope this helps you and that you can find a therapy company/facility in your area that uses a heated water pool in their therapy regimen.

 

All the best to you. and as little pain as possible!

 

Jim Evridge "AKA:SILVERFOXX_FIGHTING_BACK"

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Well - it has been almost two weeks since my second nerve block, frustrating to say, I still have no relief. In fact, it seems my left hip, thigh, and leg are tighter than ever. The physical medecine doctor seems to be at a loss. I am to the point of just trying to get back into exercising and see how it goes. I am not sure it can be any more painful than it already is. I know one suggestion has been warm water therapy, does anyone have any other good cardio workouts? I really need to get back into getting my heart rate up, that is the what makes me feel the best!! Thanks for all of your suggestions.

Natalie

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Wow.... I figured I would do some reading here tonight and have read descriptions of a lot of my pains. I have dealt with lower back pain that increases the longer I am on my feet and radiates down my leg. Pressure on my hip relieves most of it, but as soon as I stop the pressure, the pain is back. For me, squatting or laying down and pulling my knees to my chin helps.

 

I also have the aching pain in my left shoulder and arm along with in my neck. My fingers and feet feel like they are going to cramp most of the time. I also have times that my fingers will twist uncontrollably. At times my ankles will lock with my toes pointing down and they will not move without force, and when they do move they POP very loud.

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You'll discover quite a number illnesses that are neurologically based aches and pains. One, as you note with a acoustical score like the popping in your ankle. I have that in my neck and in my left elbow. The pop-crack per se doesn't hurt particularly but does unnerve folks who hear it. Google search torticollis, truncal dystonia, dystonia parkinsons, fybromyalgia and you might just be reading about yourself.

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Hi--I am new to using this method of communicating with others, and am newly diagnosed with PD. Your pain sounds horrible. I am posting here as I don't know how to start a new topic, and need some help: I am scared to death to start meds. I currently take several supplements, use acupuncture, and purposeful walking. Feeling pretty ok (balance is off and I am weak on my left side, but I don't have tremors.) One doc prescribed Sinemet and told me it would be diagnostic if it helped. Another doc suggested I could start Azilect as it might be protective of myelin sheaths. I don't know what to do! Are there awful side effects? Do the drugs help? I am 63 and don't want to start taking drugs now if it means a steady progression of increases and eventually paranoia and hallucinations caused by the drugs themselves. And since I am not having tremors will the drugs create them? Please help me sort this out--or direct me to somewhere else on this forum. Thank you so much.

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Hi sherryb,

 

I went 20 years with symptoms without being diagnosed, so I was ready for meds right away. I couldn't tolerate agonists like Requip, Mirapex, Amantadine ir Selegiline but Sinemet works quite well for me and is the gold standard for PD treatment. I take Aricept for the orofacial dyskinesias caused by the Sinemet and my MDS said it might make me smarter.

 

Your PD will progress whether you are medicated or not, but there are many things (including medications) that can make life more tolerable and possibly delay the inevitable deterioration. Your best resource for answers to medical issues is Dr. Okun on the Ask the Doctor Forum. He will happily answer any questions you might have, and give you guidance for what your next steps should be. The rest of us will be here to share experience, strength and support at any time.

 

Please keep us updated--we love to hear from newcomers.

 

Age 59, diagnosed after nearly 20 years of symptoms in 2010.

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Natalie, I also had nasty dystonia. Sometimes my toes curling. More often in my neck, right leg and right arm. Sometimes for 2-4 hours. It's amazing the variability in the disease symptoms and how different treatments work for some and not for others. In my case, DBS has worked amazingly well, had surgery last Oct at the Cleveland Clinic.

 

Wishing you the best!!!

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Hi Natalie,

 

What kind of exercising do you do? Is it cardio only? Does it include stretching?

I have some pains (not awful but quite disturbing) in leg/hand/neck on my PD side - but it almost disappears after yoga stretching. So I go to yoga class 4 times a week and also do some stretching after cardio exercising.

I wonder if it can prevent serious pains for me - and some help for you?

 

I am 51, diagnosed 2 years ago, exercising fanatic :)

 

Hope you fill better !

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hi Natasha

you are right,yoga will surely help but alongwith why you do not try homyopathic medicines...my mother was suffering from the same but i found useful the H medicines...you may try

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I tried twice - didn't see any improvement

I can't stop drinking strong black coffee - and they asked me to stop

I also stopped taking antidepressant (not in one day - took me 2 months ) - and it was a disaster :(

Both times I went to homeopaths that helped many of my friends an are known to be the bests in our town

 

So I am trying massage and acupuncture - after 2 treatments feel better - and the guy says there is a chance we can stop the PD - so i am optimistic - at least meanwhile :)

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so nice of you... acupuncture should surely help you but massage will do temporarily but homyopathy will do lasting benefits andit is not fare...no you should surely stop taking that strong black coffee ....you know why because in this med there is rarely any medicine just sensitive massage that your body has to comply with and that massage is disturbed whenyou take not only black strong coffee but any thing that is stimulants as either type of pepper, prickels, garlic, onion, ginger etc...but if you follow that..you will be astonished with results....please try that too....life is more precious to test...and h meds will hardly takes one year to make you free for these tests...

cleardot.gif

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s k singh gaur, it is nice you are so sure about ho med, but ...

 

each of us chooses his own way - so I will do the things I am sure about :)

 

in any case thanks for taking care :)

Edited by Natasha

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To those of you who have responded to this post, thanks so much! Can anyone tell me more about yoga? Will I notice improvement possibly right away or is this a long process. I am desparate. I now have swelling of my left ankle(pd side), and so far have not been able to get it to go away. Any insight on that would be helpful too.

 

Natalie

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One more try - has anyone had cold laser therapy? And does this seem to help with the pain? I will try just about anything.

 

Natalie

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Hi Natalie,

 

I have had the same exact pain you've described! Thee key word being "HAD"! I went through much of what you have, except for the nerve blocks you mentioned. OUCH!!!!! I went to my PCP (Primary Care Physician one day in excrutiating pain. He Rx'd pain rerlievers, which actually didn't come close to pain relief, and he also Rs'd a "new to me" type of physical therapy. "WARM WATER THERAPY". On my very first appointment the therapist found that the leg, on the side I had the terrible hip pain, was actually one inch shorter than the other leg! This is important because it was on my (at the time) non PD side. In all of my years with PD. the copensation for my ;eft side (my PD side) played an important role in the shortness of my right leg, and the terrible pain in my right hip. He had me lay on a table. After a few minutes of "manipulation", and a loud/audible pop. my right leg was "back in place". The only problem, other than no pain, I was just about an inch shorter! LOL! But that isn't the end of the story.

 

Next, and for twelve weeks, three times per week, came the heated water pool for my hip therapy. One hour of stretching and exercising in a 6' deep pool of water on the deep end down to 4' deep on the shallow end, heated to 96 degrees. Being the skeptic that I was, I couldn't believe that it would "do the trick". But it did! That was two years ago, and I haven't had a problem with my hip since! Nowadays though, and only in the summertime, I still do the same exercises in our daughters' in-ground swimming pool in her back yard!

 

So, IMHO, the pain I experienced was indirectly PD related!

 

I hope this helps you and that you can find a therapy company/facility in your area that uses a heated water pool in their therapy regimen.

 

All the best to you. and as little pain as possible!

 

Jim Evridge "AKA:SILVERFOXX_FIGHTING_BACK"

This probably explains why I like hot baths so much. I have severe Dystonia in my m neck shoulder and left leg.

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Thank you silver fox and afroney for posting and reposting this because i have been having this unbelievable pain on my left hip and in my lumbar section of my back, went to my pcp back in june and we did an mri on my lumbar section and they did find that i have a buldging disk but back then i also had my uterus that was enlarged to the size of being three to four months pregnant, the radiologist read the mri as if the uterus was the problem (which there were other things to consider)(we needed to have a hysterectomy) but like i said that mri was done in june, had surgery as far as the female issues i was having doing great, but the back pain is more intense and they can't say it is because of my enlarged uterus (not there) my hip pain was treated a few years back with a cortisone shot, but went to new orthopedic for a shot it didn't even last three days, so i now have an appt. with the orthopedic that did my shoulder surgery years back, i don't know what could be done, but just like you said i take norco 10/325 for pain, but for the back and hip it barely touches it, i was telling this to my husband and he is so in awe about it, it really sucks that we have to deal with pain on a daily basis, which brings me to a question that has been floating around in my head what type of muscle relaxers do if any of you take for the wonderful muscle spasms, (i have been on flexiril at night time with night meds, but they don't seem to be helping anymore) i don't know what to ask my dr for, i see my neuro on the 25th of this month. thanks again for the insight on this kind of pain, and what you have done about it, and also if anyone knows what type of muscle relaxers to ask dr for or to try, Thanks Sarahjo

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