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By mylove On 2013.12.25 04:06
I'm up tonight not because I'm waiting for Santa, but because for the first time he's told me to go away because he's in too much pain to be touched. This isn't terribly new; the pain issue has been creeping in gradually, but in the last few months the nights have been mostly horrendous. He compares the pain to whole-body cramping. It seems to come from everywhere at once, and when it hits him he either freezes or is in too much pain to move. Sometimes it's hard to tell.

His night dose of Sinemet is usually at nine. He's on approximately every five hour doses - 6, 11, 4, and 9. He keeps his own schedule, so I'm not sure if he's actually still on this schedule or not, but he says at times like this that he hasn't missed a dose.

Nothing helps this pain. Nothing. Not ibuprofen, not pain meds, not heat or rest, and he can't stand to be touched. I can't even help him undress. He rages at the pain, and all he wants is to be left alone. I am absolutely helpless to help him.

Is this the Sinemet running out too soon? Should we be adding in another interval? Is there any hope, any chance for something that will ease some of the pain?

By Mary556 On 2013.12.25 06:54
mylove, so sorry for your husband's pain and for yours. I hope there will be an answer soon.
just a thought... have you tried ice instead of heat? in the past I've had some issues with muscle knots and cramping. a physical therapist assessed that heat makes my muscles worse. ice is more uncomfortable to most people, but is the better choice in some cases.
I hope there will be a resolution soon.
prayers for you and yours.

By Mary556 On 2013.12.25 07:18
afterthought: if you have a bag of frozen peas (or similar) in your freezer, you could use that for an "ice-pack"....

By jcoff012 On 2013.12.25 11:33
Michelle, you made me cry for you both. Carl says the pain is unbearable and we are relatively new to the PD journey...year five...

I wish I could be there to hold you close, to help Ben...I have no idea what we can do for the pain, but make sure you call his doctors asap...there has to be something someone can do, right, Al?

Try to rest during the day today...You know Ben wants you close, he is just in great pain...and it seems like the pain of PD is ceaseless...Go on Facebook and look at the love in his eyes with that little baby...the love is there, the pain is masking it right now...

Hugs to you both and bless you and Ben this holiday. Jane

By LOHENGR1N On 2013.12.25 13:11
If there is something to alleivate the pain or do away with it I haven't found it in all these years. Heat or ice whatever helps a little and whatever mental gymnastics you can master to try and bolster your pain threshold. It seems to be a another part of the disease where we're on our own. In fact there are still many in the medical. Field who don't believe there is pain with Parkinson's and will proudly display their ignorance by telling you so. Many won't say it but watch their reaction if pain is mentioned they may roll their eyes tip it off with body language. Sorry I can't be of more help wish I did have the secret to share. We just gotta hang in there

By mylove On 2013.12.25 13:38
Carl gets it too? I'm so sorry to hear that. It's one of those things you just can't find any info on. There are mentions of cramps, but they sound like only one body part at a time, not this all over pain. It's getting to be most every night, but worse under stress. And we all know how good days can be as stressful as bad ones. The mornings are a bit better but he still hurts until the meds take hold.

We think this may be dystonia on a grand scale vs one part at a time. The freezing last night frightened him, I think. He felt bad when he got up and found me sleeping on the couch, but the only way I seem to be able to help him is to go away. I have no idea how we are going to reconcile his need to be alone in his struggles with the fact that eventually he really will need my help. I love him so much...he's such a good man. I would give anything to take this pain from him.'re right, and it's incredibly frustrating! No pain? Yeah, right! We will see what his MDS has to say in a couple weeks when we see her. I'm not accepting that answer from her. I'll share anything of value we find out.

By jcoff012 On 2013.12.25 18:05
Michelle, I don't know if this is of ANY help, but Carl says if he lies flat on his back, it helps...some...So, three times a day, he and Nigel lie flat on the floor in the family room...not even a pillow...Usually, Carl dozes for a half hour early and late, but takes about an hour nap around 3 *he and Nigel are asleep right now*...He has trouble getting up, but says he thinks the stretching out flat really alleviates the pain...for about an hour...then, it starts again.

We have tried buying him a Lazy Boy recliner, but that only worked for about a month, then he wanted to come back to bed...He has a lot of nights when the pain in unbearable...He has pain prescriptions, but he says they don't help, just make him groggy...By the sharp intake of breath and the moaning in his sleep, I KNOW he is in deep pain...

His new doctor has been wonderful...We got a call from his local doctor on Tuesday afternoon *Christmas Eve*!...She had a list of suggestions and test results from Dr. Christine and she wants to see Carl right after the holidays...In fact, he goes in a week from Monday at 8 AM! Dr. Christine wants his exercising monitored and a log kept and he wants him to see a specialist for his anxiety...I guess he noticed that he does, indeed, show signs of anxiety!...He also suggested that Carl needs to see a specialist in pain management....LOVE this doctor...

So, in about a week, we will know more...Dr. Christine will be his MDS and PD specialist/neurologist, but for daily maintenance he wants Carl to have local doctors with whom he can 'bond' for treatment...amazing...

None of this helps you today, Michelle, but if we learn anything, I will happily let you and everyone know...Hugs, Jane

By parkinit On 2013.12.25 22:42
Mylove, I read this to my husband as he has advanced PD and has been through the gamut of symptoms and side effects. He said he has never had anything such as this. He wondered if you husband should be taking the sinemet more frequently. Does he freeze drug the day, too, or just at night?

I wish there was some easy solution out there to alleviate this for both of you.

By mylove On 2013.12.25 23:22
We are thinking that might be what needs to happen too. The weird thing is that if he's taking a 9 pm dose then it should be getting him through more than just an hour or so. The earlier doses seem to last longer. The freezing is a new symptom over the last couple months, and seems to happen when he's off. It's happened earlier in the day but only when he's missed a dose.

By Sheridan On 2013.12.26 13:27
My husband also has alot of pain. It is worse at night. He takes his last dose at 10pm and can't move at all for most of the night. It gets so bad that he says his legs are numb but painful as well. He sometimes panics and thinks his legs are paralyzed. I get up to move his legs 2-3 times every night. He also takes advil which helps sometimes. At first I wondered if pain was from lack of movement but for the last 2 months he has also had episodes during the day with numbness and tingling. Saw his MD who conferred with PD MD and ordered x rays which showed some lumbar changes. They ordered lumbar MRI. Before he had that though his therapist recommended he get opinion from a physical rehabilitation specialist to get a baseline of his physical abilities. (aside from his PD abilities) He recommended complete spine MRI based on his physical symptoms. He will also have an EMG. Hubby is hopeful that they can fix the problem with shots or meds. I am also hopeful. I have to remember that not every problem is PD related! Just when you think you have something figured out something else goes wrong and it is SO hard to stay on top of things!! What a cruel disease...

By Trusting On 2013.12.27 22:26
The doctors have given my husband Tylenol with Codeine but it makes him sleepy.
When you said he describes his pain as muscle cramps all over, I'm wondering if the age old remedy of putting a bar of soap in at the foot of his bed would help. I have family members who got Charlie horses and they say they haven't had any cramping since the soap. I even heard a doctor say he doesn't understand it but people say it works. In fact, I think I'm going to put a bar of soap in our bed tonight to see if my husband has better night's sleep. Can't hurt to try!

By mylove On 2013.12.27 23:17
Absolutely! I'm up for anything that helps!

By LOHENGR1N On 2013.12.28 01:12
Trusting, just make sure it is way away from the pillows in case He drools! Sorry I couldn't resist it. But I've heard of the soap thing before.

By Rempt2 On 2013.12.28 12:58
My husband was in ER recently for question about pneumonia. They took chest X-rays. They showed discs protruding and lining betw vertebrae thinning. When asked if he is in pain he says no although he has full body cramps many times during the day. The dr. decreased his sinemet which improved it somewhat but it still exists. I don't know if he is telling the truth about the pain or knows he is in pain. It looks like he is when there is cramping going on.

By Mary556 On 2013.12.30 00:45
Maybe this is not relevant, but I'm wondering if hydration could be a factor? My PWP Mom has had two lengthy episodes of freezing (though not painful) and was taken to ER; both times "dehydration" was her dx from the doctor. Marathon runners get severe cramps when they are dehydrated. When I am dehydrated during migraine, my legs cramp badly.

Might increasing fluid intake help some PWP's with painful cramps?
One recommendation says "for every pound of body weight, you need about half an ounce of fluid intake per day" ... so for a 140 lb. person, it would be "140 x .5 = 70 ounces; 70 ounces divided by 8 = 9 cups of fluid per day."

Several years ago my Mom tried the soap remedy for restless leg but it did not make a difference for her. (Lohengr1n, hee hee.)

By parkinit On 2013.12.30 22:34
Good point, Mary! My DH was also dehydrated when I took him to the ER for a long freeze (several hours). Of course people have cramps when not enough fluid intake. That escaped me as a potential solution or help.

By mylove On 2013.12.31 01:01
I wish I could point to that, but my DH drinks more than anyone else I know!

By Mary556 On 2013.12.31 10:57
mylove, hope i'm not getting on your nerves with my wrong guesses.
in another thread you said that your husband's PD followed a chemical exposure... so here is one more thought:
Could the widespread pain be fibromyalgia?
I am not personally familiar with FMS triggers and treatments, but have often read that there is overlap of fibromyalgia, multiple chemical sensitivity and chronic fatigue in persons who have been chemically-injured. more info is here:

By Mary556 On 2013.12.31 11:28
parkinit, thanks again... it helps to know that your husband's "locked-in" freezing was related to dehydration as well. to know that someone else had a similar experience /cause makes me feel that we may be on the right track to prevent more of these episodes for my Mom.
Best wishes for you & your husband, too.

By mylove On 2013.12.31 11:37
Mary - definitely not getting on my nerves! :). Sometimes here it feels a bit like crowd sourcing possibilities, and that's so much more effective than my one little brain and limited experience. I am so grateful for the assistance.

FM is a really interesting possibility to consider and one we hadn't thought of. Thanks for the links. I'm going to go check them out!

By parkinit On 2013.12.31 20:43
Mary, I feel like I have someone here who really knows what we are dealing with...on the same level. I appreciate your post and candid, helpful thoughts. Hugs to you and your PWP as well.

My husband has back pain which should be more severe than he lets on. The x-rays showed a myriad of major issues. Protruding disks, pinched nerves, arthritis, bone spurs. He has been given hydrocodone to take as needed. It does make him sleep, but he gets such little rest at night (he can have up to 30 requests in one night) that it is a blessing the sleep this helps him to get. He doesn't take it often, but when he does, he said it helps the pain.

By brainstorm On 2014.01.02 13:04
Have you tried Neurontin (gabapentin)? It helped my mother with sleep and pain, and somewhat with rigidity. She took it at night, an hour before bedtime.

By parkinit On 2014.01.02 21:53
Brainstorm -

Were any side effects noted with this drug?

By brainstorm On 2014.01.02 23:37
Major side effect was sleepiness which was most welcome in my Mum's case and the reason she took it only at night. The other is that if one is prone to dyskinesia, it may increase it. There is a component of it that improves some type of rigidity as well. It helped my Mum with that too at night when she was most prone to it. Again dosing at the lowest needed amount is important to minimize side effects.

By mylove On 2014.01.07 13:43
Update- saw the doc yesterday. She feels its under medication and happens at night as an accumulation of overuse throughout the day. She has added a new drug for us - Azilect. Does anyone have experience with it? Steve - I think I read you were on it. Do you like it?

By Sheridan On 2014.01.18 10:41
I last contributed to this thread before Xmas when my husband was having tests on his spine due to increasing numbness, tingling and pain of his legs. He complained for years of back pain which was alleviated with a hospital bed, then better mattress and then position adjustments etc. We thought his pain was due to lack of movement during the night because of wearing off of PD meds. Well it turns out that the MRI shows spinal stenosis of the cervical & lumbar spine with spinal cord compression! He has had 1 epidural that did not help at all. He is scheduled for another and had to go on Norco (acetaminophen/hydrocodon) because the pain is unbearable. (using 1/2 doses as whole knocks him out ) He slept the whole night for the first time in months! I am praying that the epidural works and he won't need surgery. I feel so bad that we just "assumed" his problem was from the PD and let it go this long. It seems that every ailement he has is blamed on the PD or a side effect of PD med and we bought into that way of thinking. This disease is just SOOO overwhelming that it is so hard to see beyond what is happening at the moment and see the bigger picture. We both look back and say DUH why couldn't we figure that out? Just when you think you get a handle on one thing something else comes up and it is never the same thing twice!!! I am VERY frustrated and the HUGE responsibility is getting to me after 15 years...Thanks so much for being out there and letting me vent. I don't know what I would do if I couldn't come here for my daily dose of support!

By Mary556 On 2014.01.20 06:31
Sheridan, prayers and best wishes for your husband and yourself. It must be wonderful to sleep again after so much pain!

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