The strangest thing has happened. For the past 10 days I’ve been in terrible pain with my shoulder and X-ray showed calific tendonitis. I have been taking ibuprofen and paracetamol round the clock just to keep on top of the excruciating pain. I’ve noticed in the past week though my PD symptoms have significantly diminished. I’m tremor dominant and still have tremor but much less troublesome. My agitation gone, my balance better, my woosy brain fog gone, gait better. Yesterday I didn’t even take senemit. I’m also on b1 2gms a day. Could it be related to ibuprofen use?
Ibuprofen : The strangest thing has... - Cure Parkinson's
Ibuprofen
I have read of lower occurences of Parkinson's with those that have history over years of daily ibuprofen
Every improvement you mentioned has been reported by people taking B-1, but not by people taking ibuprofen. How long have you been on B-1 and have you found your optimal dose yet?
Art
I have been taking b1 for around 3-4 mths at 4grm and do feel much improved especially with less agitation and nervousness. Yes, maybe it’s the b1. I recently dropped my dose from 3 to 2 gems per day. (In last week)
Be careful with long-term use of ibuprofen. Have a read of this comment by Simon in an SoPD blog post from earlier this year.
I have read that a lot of people with PD take ibuprofen daily as it's anti-inflammatory. PD is caused by inflammation so it is supposed to halt the progression.
For how long have you been taking the B1? My husband has been taking it since April this year & he's been suffering with tremendous back pain (also since April) travelling down through his hip, thigh, calf and into his foot. He's taking the opiate tramadol & is on morphine. 3 weeks ago he had a series of spinal injections for spinal stenosis but they didn't make any difference whatsoever - he still has the pain.
I am beginning to wonder if the pain is related to the B1. I am going to stop giving it to him for a week and monitor his pain level to see if there's any improvement.
Gerry,
Please let Dr. C know about Glen's back pain and medication he is taking for it and your plan to discontinue B-1 for a week so he can be up to date on Glen's situation.
Art
I have not communicated with Dr C previously but will do so now as you suggest. Thanks Art for all your help.
I get similar pain symptoms. I'll write dr Costantini.
Please let us know what he has to say. Thanks.
I asked dr Costantini if back and leg pain, spam and muscle tension were a side effect of thiamine. He says...
Yes, when the dose is slightly excessive compared to the needs of the patient
Don't know but good for you! It could be that the pain was stressing you, now the pain has gone you are not stressed?? I'm guessing, but will ask you to take care of your stomach Brufen can be harsh.
I'm new here and have had an email update under this post saying Hi Getz .... but I can't find any link to it. Am I looking in the wrong place or has this message been deleted? I do respond to every inquiry mentioning me but if I can't find it I don't know what its about.
Continuous use of ibuprofen can damage your kidneys and also increase chances of a heart attack:
en.wikipedia.org/wiki/Ibupr...
Hi . I am an ultra runner with PD and hace taken Ibuprofen everyday for years even before diagnosis. I wish I could say it kept the disease away. I helps with the pain , I can say that. I haven’t been on this forum for a bit , there was some negativity that kept me away for a while. I’ve been having a rough time lately being motivated with my running and just plain being positive about life. Along with dealing with my PD, I am dealing with a husband who is an alcoholic. We have been married for 36 years and always have each other’s back . I know he loves me but I can’t count on him any more and honestly that scares me. I have enough anxiety in social settings with my PD and adding in trying not to micro manage my husbands alcohol. We always had fun together doing and going places . Not so much anymore and I miss that terribly . Sorry for being a Debbie Downer . Sometimes just saying it out loud makes me feel better because I hold a lot in. Thanks for letting me vent my PD friends . Karen
Sorry to hear that Karen, would he be willing to go to rehab or counseling ? I will keep you in my prayers!🙏🏻
Connie, He’s a typical alcoholic , he doesn’t think he has a problem. His day revolves around his beer. I am fortunate that he goes to work everyday and doesn’t drink there , at least for now, but that’s the first priority when he gets home. We used to be gym rats together , he a body builder and me a runner . Now I go alone . He hasn’t set foot in a gym for 3 years. I guess I just miss my husband and the person I used to be too. PD changes you everyday as well and I know I will never be the person I was before either. Thanks for listening . Karen
You said u stopped Sinemet one day.
It us very dangerous to stop L-dopa just like that.
A Must Read for all PWP: Once Upon A Pill by Janice Hadlock
Do you know where to find the book? I looked on Amazon and it is out of print and unavailable.
Go on google. She published it for open reading but I printed it and put ut in a binder. Quite thick.