• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Oxytocin injections anyone?

GracieJ

Senior Member
Messages
772
Location
Utah
I seem to be getting muscle spasms or knots around my shoulder blades and today just below the shoulder blade like the muscles between my ribs are clamping up, take your breath away. I have done everything today tramadol, nsaids lyrica, linament, tens machine, heat pack aarrgghh. I think its not going anywhere until i take some benzo's etc for sleep, i hope....

....Be nice to get a few shots of lignocaine into the muscles to numb them when these things happen.

Heaps, that just sounds familiar right now! I was getting migraines, which often follow months of insomnia issues for me, unfortunately, and along with the migraines came bodywide muscle spasms. I'd heard of body migraines, now I know what people were talking about. Could it be some deficit leaves muscles more apt to knot like that? What you described above is what it has felt like for weeks.
 

GracieJ

Senior Member
Messages
772
Location
Utah
Oxytocin is something I asked to get tested recently (don't have the results in yet). It moderates inflammation and might be involved in heart function. It can affect fluid and electrolyte balances, and modulates HPA access by having an impact on cortisol and ACTH release, so could cause a lot of problems that way.

Though it sounds like both low and high levels would have the potential for causing different problems.

This fits in well with the biotoxin pathway theories I've been studying. Makes sooo much sense.
 

Grigor

Senior Member
Messages
462
Location
Amsterdam
You're not very talkative today huh :)))

No but seriously , why not ?? I'm considering to test but will cost me again a test .
 
Messages
15,786
You're not very talkative today huh :)))

No but seriously , why not ?? I'm considering to test but will cost me again a test .
I'm going after problems which are more likely to be causative, rather than downstream effects. I was diagnosed with late-stage Lyme a couple months ago, and will start aggressive IV antibiotic treatment shortly.
 

Grigor

Senior Member
Messages
462
Location
Amsterdam
That's great. I'm not able to move out of the house otherwise I would be doing the same.

Well thanks for the answer anyways.
 
Messages
5
Hi,
I know this is an old thread, but in case anyone is considering Oxytocin, I have been using it for a week now with daily subcutaneous injections of 40iu/day + extra 20iu/day when needed for high pain/stress and it has been amazing! It is early days, but it has made a huge difference and the side effects are so minimal that they don't even register. :)
 
Last edited by a moderator:

Hip

Senior Member
Messages
17,824
I know this is an old thread, but in case anyone is considering Oxytocin, I have been using it for a week now with daily subcutaneous injections of 40iu/day + extra 20iu/day when needed for high pain/stress and it has been amazing! It is early days, but it has made a huge difference and the side effects are so minimal that they don't even register.

Hi 900monsta

Can you say which specific symptoms of ME/CFS you find oxytocin improves? For example, the fatigue, brain fog, emotional symptoms or emotional sensitivities, PEM? You mentioned that oxytocin works for pain, but do you mean muscle pain or joint pain?

I know that after just one week, you may not yet have a handle on what benefits oxytocin does provide, but just your first impressions.

I understand that oxytocin does help a subset of ME/CFS patients.

I tried oxytocin injections myself a few years ago, with doses from 10 IU to 30 IU. I did not notice much, apart from my emotions being more easily aroused (but not in the way I'd hoped they would: I found oxytocin rather bizarrely made me feel strong anger and indignation from seeing social injustices depicted on TV, when watching TV documentaries or TV news).

But in general, oxytocin did not do much to counter my ME/CFS symptom of flat emotions, which I was hoping it would.
 
Messages
5
Hi Hip :)
Ok, so maybe a bit of background would be best first?
Diagnosed with:
Tenosynovitis, CFS, MCS, insomnia etc at 13yrs
Had Glandular Fever age 15, diagnosed with PCOS, chronic migraines, tachycardia/arrhythmia, Costochrondritis, Vulvadynia/Vestibulitis, Fibromyalgia and all the other stuff you get with it.
I'm sorry, I don't know what PEM stands for.
You're right, it is early days to tell you exactly which specific symptoms it is having an effect on and as you know there are ups and down and every little thing has an impact on how you feel and how much pain you're in, I can only give you a general idea on how it is going so far. I will preface it with this - it is so far the best treatment I have tried.

Since adding the Oxytocin injections to my daily meds I have -

More energy/less fatigue
Sleep has improved as in - I actually sleep! At least 4hours straight :D
Anxiety/stress is much less and I am able to handle stressful situations much better
Irritability has lessened
Tremors have lessened/fine motor skills improved
Motivation has improved
Brain fog - I couldn't say
Pain - I can't say specifically if certain pains are less than other, only that all pain has lessened and is more manageable. I usually take pain killers (Ibuprofen) almost everyday until my heart gets too cranky and then I have to give them a rest. I take Valium for the sharp shooting pains/muscle spasms that you get, and also Immigran for migraines.
In the last 8 days, I have had 3 days where I have taken pain killers/muscle relaxants. That may not seem like much, but it is huge for me especially as it a very stressful time as my husband has lost his job and we are looking at having to sell our house and belongings. I tell you this, so you understand what the situation is at the moment. Before the Oxytocin if I was in this same situation I believe I would be an absolute wreck.
Emotions - I have never had flat emotions as you have described, I'm actually quite the opposite, very emotional, lots of guilt, lots of self loathing, very easily upset by things on the news like what you have described that you felt while on the oxytocin. Maybe that could be an interesting thing to look at as to why we have had such different reactions to the oxytocin. Now that I am on the oxytocin, I am less easily upset or stressed and I am calmer and less down on myself.

I'm sorry that your experience with Oxytocin was so different, I know how disheartening it is to try things and have them not work. If you don't mind me asking, are you male or female? Sorry if that's rude, I'm new to all of this.

I also take a heap of other supplements that I can list, if you're interested.
I apologise if I've waffled and/or haven't answered your questions. I hope you find something that works for you. :)
 
Last edited:

Hip

Senior Member
Messages
17,824
I'm sorry, I don't know what PEM stands for

PEM stands for post-exertional malaise: PEM is a very common symptom in ME/CFS. PEM is where after physical or mental exertion, you get hit for period of time by much worsened ME/CFS symptoms.



I'm sorry that your experience with Oxytocin was so different, I know how disheartening it is to try things and have them not work. If you don't mind me asking, are you male or female?

I think oxytocin only helps a relative small percentage of ME/CFS patients. It's certainly worth trying, because if you are amongst that lucky small percentage, you are going to reap the benefits. But for most patients, you would expect that oxytocin is not going to help. Oxytocin was one of Dr Goldstein's ME/CFS drugs.

I don't mind you asking: I am male.
 

humanrising

Senior Member
Messages
155
I am in sad and somewhat desperate need of a doctor who understands my illness. oxytocin is one of the multitude of things I would like to try. wondering if any of you who had a doctor who was willing to prescribed this is in California?
I have gone through the doctor lists here and at other CFS/Fibro lists and almost all of the ones listed are not practicing anymore hence, hoping someone might be able to PM me there doc's name. thank you so much blessings to you!
 

Hip

Senior Member
Messages
17,824
Oxytocin can be bought without prescription on websites that sell body-building peptides and hormones. It's often injected, but it can also be administered intranasally. I read it only helps a small percentage of patients, but you will only know if you are one of that small percentage if you try it. I tried it myself both by injection and intranasally, but without noticing much.
 

humanrising

Senior Member
Messages
155
thanks hip
I am a little worried about buying it online. did you get it online or by a doctor when you tried it. thank you
 

perchance dreamer

Senior Member
Messages
1,691
My doctor prescribes oxytocin in sublingual form. I use it for sleep, but since I've started using the Vielight 810 and CBD oil at night, I'm taking the oxytocin less.