Hi everyone, My mother in law has Parkinsons and is struggling with the pain in her legs. Would be interested to know how you all manage your pain.
I wondered if she should go down the private healthcare route as she does not feel that she is currently getting the right support.
I really would be grateful for any suggestions as she was such a lovely bubbly lady but is now seriously depressed.
Thankyou
Jane x
Hello Jane.
I don't understand why I received an email re your post as I wasn't a member on here.
But I would say :
Keep your Mother-in-Law bubbly. Do what you can to distract her, get her out and about to places of interest. Try something new, learn something new.
Activity (walking through the pain) and distraction.
Stretching . Moving around . Could you give her gentle massage?
What pain medications can she take ? What medication is she on? Any contra-indications?
What pain relief has she been prescribed?
Can she take NSAIDS?
Two paracetamol, then some food or milk and a biscuit then Ibuprofen 200mg x 2 (occassionally x 3) . Or : two paracetamol and topical Ibuprofen gel. (Good combination ).
For occassional use : Two Co-codamol 8/500 then food then Ibuprofen as above (tablets or gel).
There must be at least 4 hours between each dose. Can be taken 3 or 4 times a day but no more than 4 times within 24 hours.
Anything else has to be prescribed.
You can ask for a referal to a Pain Clinic.
You can buy Ibuprofen with Lysine (usually described as 'rapid relief'). They're more expensive.
If she tries Co-codamol, then she must drink plenty of water and take Lactulose medicine too.
Heat.
Hydrotherapy, if you can take her to the Swimming Baths.
A regular outing or two and week, something to look forward to.
So :
Pool say once a week (or join an exercise group ).
What is near enough to you to travel to? Is there a Zoo, Museum, Art Gallery? Park where you can feed the ducks?
Distraction can help a lot, and prayer, hope you find the right analgesia for her too.
How do you think private care would help with pain relief?
Keep pestering GP if she wants stronger pain relief.
Is there a NHS Exercise referal scheme in your area ? Enquire with GP ?
It's worthwhile asking GP to do a blood test to check Vitamin D levels also B12, Folate & Ferritin. Possible some have been done.
She can , at any time, apply for copies of her Hospital, GP or any Records free of charge.
It hurts to see a loved one in pain doesn't it - especially when we can't take the pain away.
God Bless x
Mary
Thank you Mary for your reply, I’m going to try and find out what meds she is taking I know she is on Gabopentin & tramadol. Her current quality of life is very poor as Mobility is very limited.
Will also ask her about the B12 I have regular injections and it was your kind self that encouraged me to get the help I needed without that I wouldn’t of been so courageous hence why you have been linked to this as I’m on the PA site.
I wandered if anyone had received any private care that wasn’t so readily available on the Nhs.
Once again Thank you Mary, will try and delve deeper regarding meds she is on
X
Clearly the Gabapebtin and Tramadol aren't working, so she needs to see GP about something else. Could you go with her?
Hi Jane,
Please look up peripheral neuropathy and if the symptoms match, suspect B6 deficiency due to Parkinson's meds.
Try sublingual p5p (active B6) away from L/C at least a few hours and see if the symptom improves. Also supplement magnesium, ideally Magnesium L-Threonate which helps sleep and relaxes muscles. Also look into Benfotiamine for PN treatment, and adding a good balanced methy b-complex is also highly advised. I personally like Pure Encapsulation's B-Complex Plus. Take all Bs away from the Parkinson's med.
Best luck!
If she isn't on blood thinners, Aleve helps a lot. (Naprosyn) Pain is obviously quite depressing, and having Parkinson's is horrible.
Jlg61,
Saying leg pain when it comes to PD, can be caused by different reasons and so a bit more information about your mother in laws situation will be helpful in determining the best way('s) to help alleviate it. Below is a link to an article that describes four possible reasons for leg pain in PD. Perhaps if you read that very brief article you will be able to better explain the details of your mother in law's leg pain so the forum members can be better able to make suggestions. Here is a link to that article :
parkinsonsdisease.net/livin...
Art
If we eat inflammatory foods, inflammation increases. So many diseases involve inflammatory processes. There's plenty of info online about which foods can increase inflammation, such as dairy products, wheat... Supplements, especially the B vitamins can certainly help, but taking harsh chemicals like acetaminophen, Advil - anti-inflammatories and pain pills have severe side effects.
Some articles: sciencedirect.com/journal/c... , medscape.com/viewarticle/83..., ncbi.nlm.nih.gov/pmc/articl...
Sometimes it seems easier to take a pill than to change life-long habits. But, from personal experience with partner with extreme Parkinson's related pain (including pericarditis), food can help or hinder.
ps
Does anyone get enough of the right support via NHS ? We don't. And anything never happens soon enough. We have to keep on fighting - keep pestering for what is needed when necessary. Then make the most of normal life - as and when we can.
Pain is my most aggravating symptom so far and it crops up mostly when my meds are depleted. Does she perhaps need to up her meds?
I think this response above on the B-6 and Magnesium L-Threonate is the best general and simplest option with the least prospect of delay and side effects. If it was me (and I use Magnesium to combat spasms, which it does quite well, occasionally use aspirin, occasionally use ibuprophen, occasionally use acetominophen, and I don't use any of them for long, if for more than a few days I switch them around), I would consider this the best advice so far and worth the first look.
Meanwhile, look into some self education on the longterm complications of chronic NSAIDs, just put into your search box the specific name of a medication, for instance ibuprofen or acetominophen, and add to the phrase "side effects complications chronic use" in your search engine search term box. Any hits on Mayo, webMD should be sufficient as a start.
Thank you Marion,
I will certainly think that the b6 and magnesium is a good starting point.
I will start doing some research on complications of
Chronic use, especially the hallucinations. I know she is on Gabopentin and tramadol.
Thank you
What always seems to work for me, is to stand up and walk around, and to do various upper-body exercises and other standing activities, such as preparing food, or washing dishes. This not only tends to relax my muscles, but it takes my mind off the problem. I hope this helps.
I have hip/lower back issues and I have been going to a local pain clinic just so I can walk. They have prescribed gabapentine and I have had cortisone shots which have been most helpful. Also, physical therapy with lots of stretching has been life changing for me. All the best to your mom in law...pain can definitely change our outlook on life!!
You haven't said what you have tried but if the advice set out here doesn't work, try naproxen? It got rid of all my leg pain. (But mine was more stenosis pain than PD)
My hubby has Parkinson's and was getting painful leg cramps, foot cramps & had pain in his hip too. The cramping leg & foot pain wasn't all day long, but usually started between 5 & 7 every night. At times he could relieve it by getting up & walking around; it was relentless he couldn't stop moving the pain was bad. Also, I just remembered he'd fill the tub with the hottest water he could stand and soak. His neurologist prescribed Mirapex (pramipexole)...later gabapentin was added for restless legs at night.
Both these meds helped with the cramping pain he experienced. However, Mirapex would cause him to suddenly fall asleep. The dosage was lowered which helped with that. He actually had a car accident because of the Mirapex. He was getting sleepy so he pulled over to park, but instantly fell asleep before he put the car in park. It's a helpful med...yet one I hate.
He also experienced orthostatic hypertension which might or might not cause him to get dizzy & fall especially when getting out of the car. We finally have that problem solved, by adjusting meds & staying hydrated.
Most of this happened after he had PD about 5 years. He's going on year 12 now...Mirapex has been reduced to 1/2 tablet once/day, and he still takes 1 gabepentin 3 x a day. I'm not a fan of either drug, but they definitely helped him with the excruciating, cramping pain. He doesn't have that cramping pain anymore.
One thing we've learned through the years is that he needs to stay hydrated...and for him drinking about 90 oz. of water a day has helped other symptoms.
As far as depression, it can be symptom of PD. Every appt. the neurologist will ask if he is experiencing depression. Thankfully, this is one symptom he doesn't have. The past year and a half he was acting out hallucinations for 8 hours every night. Strong meds have that under control now. I hate these strong meds, but at least quality of life is improved.
If your mother-in-law is looking for a doctor, she should find a neurologist that specializes in movement disorders...many times they will list one of their specialties as Parkinson's Disease. Parkinson's is a progressive disease & it seems that everyone has different symptoms. (I apologize for the length of my reply...I tend to get too detailed)
What "strong meds" do you use for the night hallucinations? And have you ever tried magnesium for anything?
He began with 1/2 a 25 mg Seroquel (Quetiapine) at bedtime a whole tablet made him a fall risk. Thankfully at the time, we had a gait belt on him most of the day; he also uses a walker. Because he had the gait belt on, I was able to save him from some serious falls. Seroquel pretty much stopped the hallucinations. A couple weeks later Nuplazid was added in the mornings. His cognitive problems improved too when these meds were added.
Even though his hallucinations were not threatening to me, it was like living in a madhouse. I don't know how much longer I could've remained as a caregiver. I probably would have had to admit him to long term nursing home care. Both of us are thankful that these meds stopped them. People with certain heart problems cannot take Seroquel.
He did try spraying magnesium oil on his legs for pain & cramping; it didn't help & he hasn't tried it any other form.
I want to add that because of gastric bleeding, he can't use NSAIDs for pain. A virus that almost took his life a few years ago left him gluten & dairy intolerant. So he doesn't eat foods with gluten or dairy. He was started on Vitamin B12 & Vitamin D during rehab after an emergency surgery. I honestly can't say if either vitamin has helped him in any way, but he continues to take them.
ParkinsonSpouse,
The vitamin D is well noted for being useful for depression and could possibly be why it has not been a problem for your husband and it is also useful for other PD issues as outlined in the following post I wrote :
healthunlocked.com/parkinso...
Regarding pain and NSAIDS, for myself, I have worked around the gastrointestinal issue by making topical ibuprofen, topical naproxen or topical aspirin (ASA) lotion. In the UK they have OTC ibuprofen gel 10%, but in the US it would probably take a prescription from your doctor to a compounding pharmacy and is probably likely to be a little pricey. The first time I made ibuprofen lotion, I merely took an ibuprofen soft gel capsule, poked a hole in it and squeezed the contents into a shot glass that I had put a small amount of hand and body lotion into. Once I squeezed the contents into the shot glass, I stirred it very well with the toothpick that I had punctured the soft gel cap with. After mixing this thoroughly, I applied the lotion from the shot glass directly to the painful area with very good effect. This method works well for me and has allowed me to avoid any gastric issues so far because I suspect that not nearly as much ibuprofen ever reaches my gut, but the lotion allows me to reach local tissue levels of ibuprofen that may be higher than prescription ibuprofen taken orally. Once I realized how well this worked for me, I made a larger amount of lotion and ibuprofen that is very close to 10% ibuprofen and 90% hand and body lotion of my choice. If it were too much work for me, then I would consider asking my doctor for a script that I could send to a compounding pharmacy.
Art
That is very clever. I'd have to read up on it to see how much of the NSAID might make it to his gut, because his gastric bleeding issue was part of the virus that left him gluten & dairy intolerant (this was about 8 yrs ago). He almost didn't make it that day as he had renal failure too. His blood pressure got very, very low. It was so low that one of the medical staff made a comment that he was surprised my hubby was even alert. IV's weren't helping until they finally added an IV in his jugular vein. He must've had a brilliant emergency room doctor. The addition of that last IV saved his life & his blood pressure started improving. So, needless to say, we get very worried about NSAIDs.
The nursing home/rehab doctor prescribed the vitamins for him. Things were so crazy last year...he had emergency surgery for a twisted bowel...and was given Benadryl, morphine & opiods, meds that he should never have had because of Parkinson meds & age too...oh my gosh, hallucinations were rampant during this time. He had so many terrible reactions to those meds. He called me at 4 am from the hospital asking why he was being tortured. He was in a lot of pain at the time. A long story I won't go into cause I really do write a book.
After last year's surgery, he was in the nursing home for rehab, so I started researching every med they wanted to prescribe & most of them I said 'no' you can't give him that. Boy, the medical staff was getting upset with me, until they finally realized I wasn't going to stop. They got used to my interference & would ask me first about new prescriptions.
Anyway, back to the vitamins, he never did have depression. So I'm not sure what the reason/s were for Vit. D. I have learned it's helpful for many things; I had no idea it was such an important vitamin.
But again, I will do some research on your DIY NSAID lotion.
ParkinsonSpouse,
The lotion method also works for morphine which makes a lot of sense to me because why would anyone want morphine anywhere else than it is actually needed? It is hard on the gut and can constipate you as well as slow the healing process. In my experience, constipation seems to make other health issues worse. If you can just apply it exactly where it is needed, such as the back or spine, rather than systemic application, why would you want to subject the rest of your body to morphine? For some, it apparently eliminates any "hi or foggy feeling" from the morphine too!
Art
This is good to know. Thank you!
Here is a link to a post I wrote about how I make and use topical NSAIDS to greatly lessen the chance for gastric issues associated with longer term regular use and also to try and target the specific area of pain instead of the whole body. :
healthunlocked.com/parkinso...
Art
I think this is a very helpful reply.
Not too lengthy at all.
Thank you for taking the time to reply, I’m going to make a list of all the helpful suggestions from everyone. You have all been so helpful.
Pen at the ready to make notes and make an action plan.
X
Jig what meds is MIL currently on and how long has she been diagnosed with PD. Where does she feel the pain?
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