A couple of months ago I started having hip pain mostly at night, lower back pain and more stiffness. It didn't occur to me that it could be the B1 until I read someone else on HU mention that they had hip pain.
I've been taking B1 since January 2018. Started with 4000 mg but pretty quickly adjusted to 1000. When I realized it could be the B1, I suspended it and a week later the hip and back pain and the stiffness was about 75% gone.
Yesterday I took 500mg to see what would happen, and last night hip pain woke me at 4am. So it's pretty clear that it's the B1.
I'm wondering if I might fare better with injections. Any thoughts?
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rebtar
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Hi Rebtar, I posted a week or so ago regarding any link with B1 and joint pain as my husbands hip is giving him pain and we cannot link it to any activity or injury,,,he did go off the B1 for a week, has started again at half the dose, so 500mg twice a day. During the week off the pain was still there off and on, hurting more on long walks etc. Its been three days back on the B1, no increase in pain, buts it's still there, he sees a physio tomorrow so we will see what she says. He says he feels it's not the B1, and he feels better on it so definitely don't want to stop it. I wonder also when you have PD do you tend to get more joint pain? He is still very active, works full time , only 47 . It's all a learning curve isn't it. And with Dr C away for a while we cannot ask him, he may have answers for us soon.
Phaedra
Dr. Costantini has previously said that a dose that is slightly high can cause such pain and it is an indication of overdose. Here is a link to the HDT FAQ page and please look at question and answer #55 :
Thanks for the info, we will carry on at the half of original dose for two weeks and monitor things. Besides that issue my husband feels great being back on the B1. Don't want to add anything else like magnesium yet as we are trying to keep it simple at the moment, yet Dr C does suggest it for some people doesn't he, I wonder what is the indication for magnesium?
He will almost never suggest magnesium during the testing period of trying to find your correct dose. Generally he will suggest magnesium if he feels it may potentially help you after you have already established your correct HDT dose. Magnesium helps in the conversion process of thiamine hci to its active form and sometimes can have additive effects in terms of symptom relief.
IMO b1 can increase the perception of pain of a pre-existing condition such as a toothache in my case, sometimes the nerves under the effect of b1 could be hypersensitive to inflammation for other causes.Easy to discover in my case. I would pay attention to mineral deficiencies in general. Magnesium in the first place.
My husband who has PD & arthritis, started HDT April 2018. About the same time he developed very bad lower back pain. After many visits to the GP & the hospital plus steroid spinal injections, opioids & morphine (as well as traditional pain killing methods advised by easilly ie ice, heat, ibuprofen gel, magnesium oil, etc) the pain has gone from his back but is now in his ankles, feet & sometime his calves. He was taking 1g thiamine in the morning and 1g in the afternoon. For the past 8 days, he stopped taking thiamine but there has been no decrease in his pain (if anything, it may be slightly worse). Today he is going to start B1 again but at 500mg morning and afternoon and we'll see how he is on that dose.
I'm wondering where inflammation might play a part in all of this, before I ever had a PD diagnosis I had severe pain and it was from inflammation, turns out my CRP was off the charts. Had to work to get it down.
I'm still working on it, but got it down halfway just with diet. No dairy, nuts, sugar, grains, soy, eggs, red meat, nightshades, fried foods, preservatives, citrus, salt and chocolate. Lectins are especially high in egg whites. Eat lots of veggies, most fruits,poutry, decaf coffee, healthy oils like olive and coconut oil, although I did use ghee. I'm now doing a Keto diet for the inflammation, weight loss and ketones. Will check my CRP next week to see how I'm doing. Stress can play a part too. I also take anti inflammatory supplements like ALA, Glucosamine, Turmeric, Omega 3, etc.
Another thing I found recently was a bone spur and other slight abnormalities with one hip that can cause pain, didn't know I have. I also see a Chiro and use Trigger Point Therapy for quite a bit of twinging pains in muscles. Trigger points, tight muscles and spine issues can cause pain to radiate down into the hip, leg and foot. Has been a Godsend the last 10 years.
Amla is able to lower "high sensitivity C Reactive Protein"(hsCRP) which is similar, but not quite the same as "C Reactive Protein"(CRP). Both are biomarkers for systemic inflammation though. Amla can very effectively lower hsCRP by greater than 50% and raise serum glutathione by greater than 50% while significantly lowering MDA, a biomarker to give an idea of systemic oxidatative stress.
Obviously you would need to check with your doctor first to make sure it is compatible with all that you are taking. I believe Despe was going to discuss Amla with Dr. Mischley or Dr. Mischley was going to look into it when she got the chance and maybe she has gotten that chance and can enlighten you more about Amla.
Most manufacturers do not include that information on their labels, but even ethanolic extracts of amla have shown benefit in studies. I'm taking it myself and basically settled on using an "extract version" as opposed to raw powder, since it was an extract that was used in the studies. I imagine you can check with individual manufacturers to find out which form they are using.
This explains why so many natural plants and fruits that should be in our diet can contribute to reducing inflammation levels. This sounds like they used a particular fruit for this, but many high quality essential oils can offer the same or similar benefits. Looks like I need to step up on using my EOs like Clove oil, Oregano Oil, Thyme, Basil, etc. a good quality oil can be ingested, diffused or on the skin.
Were you able to determine the cause of your hip pain now that about 9 months has past since you reported it? If you were able to resolve the hip pain, how did you do it?
Not yet, Art. The hip pain is less but I still seem to get more stiffness with b1. I increased my C/L and that has helped, I have yet to try b1 again with the increased C/L.
Has your doctor made a determination on the hip pain yet and does mag oil do anything for the hip pain? Any feedback is helpful as I have read many members who report hip pain! The lower back pain that members have reported seems to be frequently related to spinal stenosis and or calcium deposits in the form of burrs or spurs, which seems fairly common in PD.
stopping the higher dose of b1 helped a lot. Then more recentlyI had more lower back, butt and foot pain. I see Dr mischley, she recommended increasing C/L and that has helped a lot. Mag oil didn’t seem to help but I didn’t use it for long. With the increase C/L the pain is minimal. Still taking a relatively low dose. 3 x 25/100 IR plus one 25/100 ÉRICA at night.
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