issues and pain for women in Pd. Anywhere safe to share? Here?

[HekateMoon]

Hi all im experiencing some very ennerving pain. A few days ago i thought it could be central pain. It really feels like tooth sensititvity but it affects sacrum, leg, and intimate area. I research online and came accross a link. They called it "restless genital syndrome" Just before i had any Pd symptoms i had two operations for a difficult hysterectomy. Looking into Hormones matter site i saw many women affected by hysterctomies...i read the research and sent to my gp. I know its an embarrassing intimate topic but if its ok, has anyone had heard of this experience? Anyone/ where to share? What could i do for this pain?

[chartist]

Something simple and non invasive that might be worth a try since most people have low levels of it, is an absorbable form of magnesium such as this :

amazon.com/MagEnhance-Suppl...

ncbi.nlm.nih.gov/pmc/articl...

To try a less expensive form of magnesium first to get an idea of whether magnesium may be helpful or not, you can try a topical magnesium chloride spray such as this one that can be applied to the external areas such as the sacrum, back or legs to see if magnesium may be of any benefit for you :

amazon.com/Magnesium-Oil-Sp...

I have found the mag oil spray for relief of certain aches and pains of the muscles and joints and it very rapidly stops muscle cramps and this ionic form is very well absorbed through the skin to add to your total magnesium intake.

Art

[House2 in reply to chartist]

Look into interoception. youtu.be/WIYVRTJxI4Q(Not working as expected?)

[HekateMoon in reply to chartist]

Thank you Art. Im taking Magnesiun cicolinate

[chartist in reply to HekateMoon]

I'm not familiar with magnesium cicolinate.

Art

[HekateMoon in reply to chartist]

Sorry Art. Magnesium citrate. I was very tired when i wrote it.

[Dap1948]

You don’t say what you’re taking and if that has changed. Did I read the other day that you were taking TTFD B1.? This form of B1 is very strong and you can overdose very easily. The pain could easily be a B1 overdose symptom. If you think this might be so I would recommend stopping the B1 for a week or so and seeing if the pain subsides.

[HekateMoon in reply to Dap1948]

Hi Daphne. No, the pain was there prior to me taking TTFD, but ill take a break for a few days to see was happen. The problem i found with the sublingual was the prices had increased enormously and i could no longer find a provider. Ill be grateful if you know where i can source it. Im in Ireland I will take a break, however to see if something changes or shifts.My regime I take opicapone in the morning, then was taking TTFD in alternate days, half an hr later i take 3x50/12.5 madopar, vit d3 vit b12 vit c 1000mg and 75mg trajenta for diabetes, 4 hrs later i take one mucuna from british supplements, 4 hrs later, 3x Madopar 50/12.5 4 hrs later and to sleep mucuna, magnesium citrate, lyrica and melatonin 10mg.

I discussed this pain with my dr.

First she prescribed duolexetine...an antidepressant i then became aware of the research i mentioned above (they equate the pain i have with restless leg but called it restless genital syndrome) and she prescribed mirapex 2hrs before sleep as duolexetine had appeared to aggravate the issue in the woman in the study. The mirapex may have been too much for me as i spent two days with nausea, vomiting, dizziness...the pain was still there though...thank you for replying, Daphne

[Dap1948 in reply to HekateMoon]

I get my sublingual from here. pureformulas.com/no-shot-b-...

They post to Scotland and are very cheap! I think it’s possible for B1 to work whatever form of B1 is tried. They vary hugely in dosage requirements however. TTFD being very strong and possibly requiring a lower dosage even than sublingual.

[HekateMoon in reply to Dap1948]

Hi Daphne. Trying to but the page doesnt allow me to get to checkout. It says oops page not found. May try later...this was the easiest and mos affordable b1 for me but after brexit every time i tried to buy anywhere, even using addresspal, (like parcel motel but irish)i ended up with about 14 or 15 euro with postage. Its not too much on its own but if you add mucuna, magnesium, melatonin, b12, d 3 etc...and you live alone, unemployed it all becomes too much. When i was working i never had these issues and i cared for myself the best i could, but since dec 2019 it all has changed. Thank u. Ill try the site again later.!

[HekateMoon in reply to Dap1948]

I've Tried this site after many days and didnt work. I sent them an email and they replied asking about the product brand i replied and sent a picture. I got no more correspondence from them but they started sending me advertising about everything else. Ill start again...😊

[Dap1948 in reply to HekateMoon]

Where do you live? The firm sends to many countries but not all.

[HekateMoon in reply to Dap1948]

I live in The Rep of Ireland, Daphne. Were neighbours! The problem is when i reach the shopping trolley even before i input my address. I wonder if trying to use the phone is the culprit...🤨will try later with my friends computer. ..thank you!! Chelo

[EJMo]

You absolutely should feel free to raise this here and in no way should you feel embarrassed. There are tons of potentially “embarrassing“ symptoms with Parkinson’s but we need to start talking about them. Unfortunately I have no experience of this to be able to offer you any advice but I hope you get a solution.

[HekateMoon]

Thank you EJ. You're very kind...still...not easy to share when 9ne feels so vulnerable

[Gymsack]

Maybe it is uncomfortable for women here because there are many more men with PD and their symptoms are not generally the same , but we do not make it so on purpose or even knowingly. Parkinsons will put you through every indignity , sometimes it is just too much to discuss but with age comes a thicker skin, a grumpier disposition and a stone face and an understanding that its not your fault . I think that our brains lack of two way communication with involuntary muscles is the biggest problem and flatulence with no control is the resulting indignity.

Little old ladies who toot when they walk like little steam trains. They just act like they dont know about it and wear some perfume. I do the same but no perfume. Pert, pert, pert, pert pert, There, now you have that to look forward to. Smile , I hope you feel better soon.

[HekateMoon in reply to Gymsack]

Ohh Gymsack, you made me laugh! I fart like a queen also sometimes ..😅

[Gymsack in reply to HekateMoon]

mission accomplished

keep smiling

[arty-fact]

I have occasionally experienced intense aches in these areas - this is very simplistic, but do they ever correlate with constipation for you? Heat packs are my daily go to for so much pain relief. Good luck with everything

[Stillstandingstill]

Hi. I see you've sent info to your GP but have you actually seen someone about this? A toothache type pain can indicate nerve involvement and you really need to be assessed IMHO.

[HekateMoon]

Im trying to get a referral...today i feel ok but i dont trust it not to return...

[katherinecompton22]

I experience a similar type of pain/discomfort when I take too much levadopa. Lowering my Rytary dose seems to have eliminated it.