PD VRS. LOWER BACK + LEFT LEG PAIN

[BBPILOT]

AFTER LAST SHOT 6-6-12 OF DX-724-2 PROPO THURPY

TODAY 6-14 PAIN IS WORST THAN EVER , STILL NO WOKING. ,ALL LOWER BACK AND LEFT BUTT

BSET TO ALL,,BB

[Hidden]

Neck, lower back, leg and arm pain. are all things I think we have to put up with

[honeycombe3 in reply to Hidden]

WHY?

[gypsy]

I too have serious back pain and constant dystonia in my left arm, this has gone on for over a year now. My GP prescribes pain killing capsules which do not help at all and I'm now at my wits end, don't think I can stand much more of this constant everyday debilitating pain.

I've just been informed by my physio that my back is twisting across to my left side, which is my pd side, so it's technically bent. I know just how you feel and although I have no solution to the problem, I can certainly identify with you.

I'm sure there are many others who feel the same, but it's pretty depressing having pain all the time.

Gyp

[moonswife in reply to gypsy]

Gypsy,

My husband has had similar pain for the last 4 years. He just refuses any pain Rx at all because he feels they make his PD meds less effective. I have enrolled in a 500 hr massage therapy program this last spring at our Community College. He actually woke me up for a back massage last night, and just asked for foot work an hour ago. It allow him to go back to sleep. If you have a willing caregiver you can find some of the techniques like efflurage on YouTube. See if it will relax you long enough to sleep for a while.

[soup]

My husband gets pain when his meds need increasing. Not sure what will happen when he gets to the maximum dose but we'll cross that bridge when we come to it.

Sue

[honeycombe3]

THIS PAIN IS KILLING ME. I've had to stop being brave. I moan almost all the time, pant through bad bouts like I did through labour pains, cry (mostly) in private & make everyone near me upset. I can't concentrate on even the simplest tasks, drop things, knock things & shake iinside & out. I've stuck it for 2 weeks but it's getting WORSE. I'vehad bouts of this before so I take Tramadol but it's not touching this pain. I've rung PD nurse & I'm seeing my GP in 30 mins for quick fix. My symptoms are as BBPILOT (left side tremor) but I don't have injections. If I was an animal right now I'd be put down. CAN ANYONE HELP??

[Court in reply to honeycombe3]

I also am having really bad back pain just over my left hip. My tremor is on my right side. Can't do anything that involves walking, standing or bending - which means almost anything. I don't know the answer to this, but if it continues I am going to phone the Parkinsons physio. Don't like taking pain killers as I think they affect my tablets.

Am guessing your pain is a lot worse than mine, as mine is just bearable.

Legs also give me pain and cramps. Hope you get some success from your GP as your pain sounds unbearable. Hope things get better for you soon as you sound as though you are at the end of your tether.

Sue

[MagicMax in reply to honeycombe3]

Things that help me:

Gabapentin

Deep breathing

Gentle stretching

Ice packs

Sleep

Watching funny movies

Massage

More sinemet

Hopefully one or a combination of the above will help you...

[ShakeDaddy in reply to honeycombe3]

I have left leg pain and dystonia left foot . I was dx 11 yrs ago. .my Neuro gave me generic for Neurontin.my pain is gone 90%gone.other things persist lol! Such is our life ! Start sleep apnea treatment tonight. Good luck, I will pray for you. SD

[BBPILOT in reply to honeycombe3]

YAHOO YAHOO LEG AND BACK AND FOOT AND BUTT A=OK NORMAL NO PAIN,,

CAT-SCAN SHOWED I HAD "SPONDYLOLISTHESIS" VERT BETWEEN 3&4.

1 SHOT IN SPIN ,,AN EPIDREMAL,spell?,OF CORTISONE + ON 7-16-12

DID IT , TOKE 4 DAYS TO GET TO O PAIN

BY THE WAY DR PESCEB, ADVILE PATCH TILL I TOKE SHOT,,HELPED

LET ME NOW IF I CAN HELP

BB66

[Maria29]

I get that constant searing pain in my legs, arms and supper shoulders & neck. THe only thing that helps is prednisone..... I know there are many complications from that drug but I DON"T CARE.....It takes the pain away. THe problem is gettin a DR. who will prescribe it with refills.

[kath33]

i have neck pain back pain and leg and foot pain at times also very bad heads i take stavelo and mirapexin they help but does anyone else get this im 51 and have parkinsons they thought was arthritis at first. anyway i dont let it beat me hard at times but determined not to let it change me or what i like to do i still enjoy dancing wen im out wen i feel ok i sometimes suffer the nxt day but its worth it to be positive and happy is important but bin told need antidepressants i get down at times but already on lot of tablets

[kirleyvall]

Having suffered pain in my legs and feet for the past three years, being

diagnosed with peripheral neuropathy, edema, bursas and problems

from fractured spine 12 years ago, I have had three sessions of

acupuncture. After the last one, I was handed a tiny bottle of

ZHENG GU SHUI which had been rubbed into my legs to help

circulation. Forgot all about this for a couple of days then, last

Saturday, my pain was getting me down, and I put this lotion

all over my legs. The effect was instantaneous - no pain !!!

Unbelievable ! Since then I have just topped it up each day

and have been able to walk almost normally.

This is, obviously, only my experience, but having googled,

ebayed and amazoned, there is plenty of evidence that it

is a renowned painkiller for all sorts of conditions. I will

be buying a large bottle, but it is available in small size

for under ten pounds I believe, and is better than more

drugs.

I hope someone may find relief from pain with this.

Val xx

[gypsy]

It's a little consolation to me that I'm not the only one with the pain, don't know how I'll cope much longer though. Thanks for that Val....I'm off to google!!!!

gyp

[PatV]

yes PD grabs any pain and RUNS with it. a little xanax helps. Also I have an aromatherapy blend that is more effective than Aspercreme. PT helps. Good luck to you . I also moan in public to the horror of my kids.

[olpilot]

My journey into parkinson's stated with a pretty severe cervical spinal stenosis. I had been having many pains, still do even 2 years after cevercial surgery. My spinal canal was completely closed of between c3-c6. It would not let any spinal fluid flow from my brain to my spine, The drs seemed not to think it had anything to do with PD but it did seem to hid the PD symptoms. I still have very strong pains everywhere below my cercical spine. I tried to get by on Nsaid pain relevers, like aleve. It worked pretty well for the pain, but I developed a severe anemia. I could barely walk, so tired all the time. Even had some syncope events. I thought it was just changing to Requip, plus I have Postural Hypotension. Anyway went in for normal blood test and was found to have a hemoglobine of 6.8 low for men is about 14. I was immediately put in emergency for 2 units of blood. Need to be careful with pain pills I guess, The big thing is there seems to be no good way to escape pain, and hard to figure what is causing it be sides PD. I've had to go 3 weeks with no pain relief till they find the cause of the animeia. Had endoscopy, colonoscpy, thurs I get to swallow a mini camer that will take about 77,000 pictures as it travels through my system. Getting tired of liquid diets and colon cleansers. Maybe time for VooDoo.

[IamJoel56]

My lower back pain WAS unbearable, My general practitioner referred me to a pain specialist. He did three injections in the nerves between my four lower vertebrae. He repeated that two weeks later. The plan was that if these injections relieved the pain, two weeks after the second set he would burn out the nerves, They did and he did and my lower back is now PAIN FREE! I've had EO-PD for about eight years and dealt with increasing pain for most of that time before I did something about it, BOY AM I GLAD I FINALLY DID! The surgery was out-patient and only required a local.

[Alley]

Thank you for your question, and thank you Joel for you experience. I'm want what you have - no pain.

[honeycombe3]

Thank goodness for this site. So many of us with similar symptoms, in this case largely unattributable pain. Many of us single-side PD (more left than right?) with back & limb pain from the neck down. Some muscular/skeletal but lots generalised idiopathic & thus largely untreatable. Foot, ankle & lower leg pain frequent: where is this featured in PD literature? Where is across the board treatment for these areas (as for diabetes)? What research is being undertaken into the causes, effects & treatments? I had problems with my feet in particular for some time around dx. I was also being treated for arthritis for neck, back & joint pain. The more I communicate with PD PATIENTS on sites like this, through clinics & conferences the more obvious it becomes that these are issues of significant if not major concern. Can I ask WHAT IS BEING DONE by charities & the medical research community? Would it be a suitable subject for a site poll?

Sue & others on the subject of pain:all pain is tolerable if we are forced to live with it. We may not be able to function but it seems that because we are human it must be acceptable (especially as it isn't all the time). so no more whinging Ange (me) grin & get on with it.

[Court in reply to honeycombe3]

There is no point in me whinging no one takes any notice! I always take a double strength Ibuprofen, followed by 2 Paracetemol, if needed and try to work through the pain. In other words, get on with it.

Did your GP offer any positive help? Or only pain relief? Hope things settle down for you soon. I am going to phone the Parkinsons physio to see if my hip is a posture thing and if there are any specific exercises I can do to help. Will let you know what she says.

Sue

[BBPILOT]

THANKS ALL,,,, BB

[monast]

I have to join this company of people like me!

I have had these pain for about 6 months now, my lower back, hip, thigh and leg - on the outside. I do not want to live on even more medicine so I fight everyday to find a solution. I have tons of YouTube links telling me they will remove my pain.

So far I have learned that I move incorrect because my right foot (Pd-side) is Curling. I am still optimistic and will continue to fight to find a solution.

I just tried a cortisone injection but that helped for only two days.

I must keep on training (not in the morning when the pain is unbearable - but later.) I try yoga, qigong - and Strength training - and I keep on looking.

What about a Osteopath! Has anyone tried this ?

Chiropractor ?

I can promise you one thing : when I have found my pain relief .....I will inform you about this as soon as possible !

[BBPILOT in reply to monast]

Hi mo,

Sorry but i'm just responding.

We are going thru the same Pain Train. Mine is on my lower back, left butt,left thy and leg, Moves from place to place and called "Lumbar Radiculopatht "(sciatica ) Treatmant hase been "Prolo-Thurpy-Dx7242.2",

Shots . 2 vizits. Good for 3 days, pain level 3

I have one more set shots on 07-03 and well let you know.

My pain level goes from 9 in the morn to 5,, even after 2 non-asprin pills and i take 3 to 4 in 24 hours

I went to UTUBELUMBEARRADICULOPTTHY.COM for info

My e-mail = [e-mail]

AGE 66 NJ

CHEERS,,,BB

[monast in reply to BBPILOT]

Thanks so much, I like the word Pain Train....

I will look into this as soon as possible. What did we do when Internet was not a part of our life.....

It's so nice to know that out there somewhere in the world there are more people who fights the Pain Train. I would very much like you to inform me if you get a pain releif.

I am 63 years old, from Norway

[Hidden in reply to monast]

My left side is effected. I find that gentle stretching, exercise and massage therapy helps. I've discovered that if I lie down and put a tennis ball directly pressing on the painful area (trigger point) and keep pressing, the muscle will relax somewhat. My massage therapist recommended this and said to continue each session until the pain eases then move to another area. This seems to work as I have a pinched sciatic nerve - pain from my hip/glute shooting all the way down my leg. At first it is uncomfortable (I feel that pinching, tingling sensation), but if i continue pressing on the spot it helps. I do this several times a day.

[monast in reply to Hidden]

Thanks so much for your info. I will really try this with the tennis ball. I have been on and off during my vacation, and I have come to the conclusion that I must exercise lightly, and to the stretching - and massage - as you write.

This last week has been as painful as ever. Earlier this summer I had a massage that was just concentrating on the trigger-points. It as really painful, but I think that it made things a little better afterwards.

Have a nice day!

[Hidden in reply to monast]

monast, I hope this works for you. its difficult for me to find a comfortable sleeping position without the pain. If the pain starts acting up at night, sometimes I'll even get up and get the trusty tennis ball. Let me know how this goes.

[BBPILOT]

Hi Mon,

I will keep you adized on the Rolo- shots.

Cheers BB

PS: ARE YOU FAMILURE WITH A B&B NAMED " ASPEN B&B " LOCATED IN NORWAY?

'

[monast in reply to BBPILOT]

No, sorry, I don't know about Aspen B&B in Norway.

[BBPILOT in reply to BBPILOT]

OLD FRIEND , THANKS

BB66

[Jeanna]

I too have back pain on the left side and pain in left side of calf as well. The left side is where the tremor is too. I can hardly stand to do things in the kitchen unless I sit on a stool. Standing or walking for any length of time is very painful. I had an MRI which showed spinal stenosis L4-5, but I wonder if the PD has more to do with the pain than the stenosis. Has anybody tried accupuncture for this type of pain??

[BBPILOT]

JEANNY,

On of the last things to try, I have more stots .next Tus ,,3

I wll chat with DR

[monast]

Couple of weeks ago I wrote: What about a Osteopath! Has anyone tried this ?

Chiropractor ?

I have now tried Chiropractor for three treatments, I received an offer I wanted to try out - with these three treatments. First 10 min of hard massage on my aching right leg (PD-leg), then the chiropractor comes in and breaks and stretch my spine. The last thing he does is to pinch my back body with small needlesticks all over my back, hip and leg. .Started last week - and I do believe that my pain are less strong now. At the same time I have relaxed from hard training and walking on hard ground. But I will soon start training again, and will have to find the right the thing to do about training.

I will give it a couple of days and see if anything has changed.

A pain relief is a good thing, if it's diffecult to cure the pain.

And my meaning: PS people does NOT have to live with pain. We must fight together to find a solution. That's my opinion!

[BBPILOT in reply to monast]

PS

DR. HAVIG ME TRY --------- ADVILLE PATCHES ------- ALSO

BB 66

[BBPILOT]

Mo

Had a long chat with the Dr today and he cofirmed the PRLO-TH. shots are not workinh , so i have an appontment with an ORTHOPEDIC Dr for more options,

Dr also felt that PD PORBABLY ,LOL, can not cause the leg/back pain

BB63

[monast]

I dont really know what PRLO-TH is, I had a shot of Cortisone, and I think that helped a little. Things was a bit easier after that shot for a week or two, but as I said: A "bit" easier.

I would also think that a orthopedic dr is useful. I think that the reason I get these pains is that I walk incorrectly due to my right foot which I am curling in when I walk, and besides that my whole body is skewed due to Parkinson.

My Dr says (GOOGLE: Trochanterbursitt in addition to the trochanter-tendinitis. A bursitis is an inflammation of a bursa, and in this area are a number of mucus bags. However, it is often difficult to distinguish between the tendon inflammation (tendinitis) and inflammation of the bursa (Bursitis). bursitis most commonly occurs because of prolonged stress in the hip area, a lot of walking and standing can contribute to this. The pain is particularly bad when the patients go up stairs or hills. Often, night pain and especially bad when you lie on the inflamed side. Typically, a NSAID ((Ibux, Voltaren tablets, etc.) cure lead to improvement, but if this does not work, a cortisone injection may be more effective. If the cortisone injection, local anesthetic, made ??at the point where it does the most harm, it will if it is properly almost immediately cause no pain to the patient. Such a drug must often be two times with 1 to 2 weeks apart.)

And as I wrote yesterday, I am trying out a Chiropractor, I feel better after three treatments, but I'm not quite sure yet.

Problem is that we try and try all sorts of things when we have pain, because there is no way we should want to live with these pain!

Ok, lots of info from Google and me today - its 8 o'clock in the morning.

Have a nice sunny day to day!

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[BBPILOT]

Hi,,

See what are saying on all that.

PRLO shots are nothing more than shuger warter shots.

Buy the way,, the AVILLE PATCH at my farmicy was $ 400.00 usd a mounth.

but I'm talking AARP and Med-Care to change.

Right now i live by taking 4-5 TILANALs 500 mg a day but need more

9:20 PM EAST COAST AND GOING OUT TO SEE FIREWORKS

HAPPY 4

BB66