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micro dose therapy, cortisol
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wanttohelp posted:
New to the site, I am a husband of FM sufferer. We are exploring treatment options as the last 15 years have not provided any long term relief and the symptoms are just getting worse. I want to ask about micro doses of cortisol and if anyone has tried this and the results. What are the side effects as this is sometimes worse than the original symptom? How is it administered and monitored? Any information would be great.
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fibroinsd responded:
Hello and welcome...how nice of you to be trying to help your wife..it is frustrating isn't it..

I am sorry I don't have any info for you on cortisol..so I hope someone that knows more will stop by soon...so keep watching for more responses...

Do look on the side of the page for helpful tips and resources and look for the member toolbox...we listed things that we have tried that have helped..

and I am sure Mimi will stop by and remind you to have your wife's Vitamin D. level checked...you would be surprised at how many of the people here are low in Vit. D.

What meds have you tried? There are choices..but most have some sort of side effect...I don't think anyone has found the perfect thing yet..but some things that can help.

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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mpathia replied to fibroinsd's response:
More good "insight"...
 
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dollbug responded:
Hello and welcome. MiMi in NC. What a good thing you are doing, trying to help your DW find something that will help her cope better with the wrath of the dragon. We do not see this often or hear from spouses much here. I am glad though that you are doing this. It proves you care.


I can not help you with the *cortisol*. sorry...is this something the doctor wants her to try? I would though like to ask you if she has gotten her Vitamin D level checked yet....this is really important to a lot of people and it just might be something that will help her with the pain that she has. Low Vitamin D does cause some people to have additional pain and it can also affect other illnesses as well. It takes just a simple blood test BUT she must ASK the doctor to do it....as it is not included in the normal blood work that the doctors do.


I am sure you will find lots of good info here though and some good *tools* that just might benefit her as well. It does take a trial and error process to figure out the right combination of tools that will make a difference.


You have not said what she is on now or what she has tried. I know that in the beginning I tried several different kinds of medicine but I did not find anything that helped me without causing other side effects. I finally did my own research and now I take vitamins and supplements and do other things as well which does help me. I am NOT painfree, nor do I expect to be...but I have less pain than I had in the beginning. I take Fibro Response and Magnesium Malate which is found in Vitamin stores. I also take P5P for my lower back pain. Omegas and a good multi vitamin with extra D. I try to watch what I eat and drink plenty of water. I also try to keep a schedule of sorts. Limiting stress will also help, if she can do this. (I had problems with this) Getting enough sleep is also really important as well. Learning how to pace, pace and pace even more will help her as well.


Facing the wrath of the dragon, aka FM is a challenge for most of us....and dealing with it is even harder. Things can change often and when we least expect it. Things can be find one minute and then the next, it hits us and we are stuck. I also have chronic fatigue and it is like my body running out of gas....and I do NOT know when it is going to hit, since I do not have a *tank* to know when I am getting low. But when it hits, it hits and that is it. I have to wait and try to rest....as I have no other choice in the matter. It is tough sometimes and can be really bad at times as well.


I am not sure that you will find any *long term results*.....but IF you do, then I hope you will *share* them with this support group because I am sure all of us would like to know what it is.


Sleep is really important to us FMers....taking a hot shower at night right before bedtime using lavender bath salts might help her rest better.


Has she tried using a heating pad? I use mine almost daily. I have found that putting it around my neck area helps ease whatever pain I might have....(it does not have to be neck pain)....I do not quite understand this but it works for me.


Doing gentle exercises and/or stretches might also help her as well.....*gentle being the key word*.


Be sure and check out the info here under *tips* and *resources* and be sure and review the *member toolbox* as well.


Take care and I hope you find something that will help your DW soon. Be sure and have her post here as well.




MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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booch007 responded:
Good Morning Helper,

I am not really sure what you are asking? Cortisol is a hormone from the adrenals responsible for many things. Your salt balance in your body along with others regulating that, and it is your steroid base. In the endocrine world it is a multitasker.... It is responsible for deposition of fat to the belly, and weight gain.

There is theory that we are adrenal fatigued. But there is no one I know here using anything like that. Steroids (or the cortisones) are not indicated for us because we are not inflammatory.

We may feel like our whole bodies are inflamed and swollen at times but it is not reality. If the physician gives your wife a trial of steroids and she feels better it can also just be a "steroid high" a feeling of wellness that the med produces. Long term they will do harm. Calcium is lost from the bones, water balance is thrown off and weight gain adds to the mix.

There are people that MUST be on steroids (cortisones) and it is then a discussion of risk and benefit. They also give a high dose and then pull down to the lowest dose possible.

I am not sure where you got this information. If you read our posts you must have read my recommendation of the FM and Chronic Myofascial Pain (a survival manual) by Dr Devin Starlanyl. 19.99 on Amazon.com. There are two books available the first has so much information to help and learn and the second is the latest information out there.

It is >15 years I am fighting our friend here.....everyday there is a bell that rings and my gloves go on. The best thing I did was eat green (meat chicken and fish with anything green for vegetables) to detox my muscles and then ONLY water to rehydrate myself....it took 2-3 months to feel a difference but it was amazing when my body changed. I paid alot of money for that information and it is priceless to this day. I take all he taught me as gold in my pocket.

As a caregiver I feel for you, as you cannot make your DW do anything. I was motivated to do anything as I was near "leaving" Couldn't do the pain.....but so much has happened since I put on those boxing gloves and started fighting this.

Another thing he taught me " DON'T GET SAD..GET MAD...

I fight with education from the books....foods I choose and water I flush my cells with. I fight with doing things I like and pushing a bit and resting and pacing in the middle. This is the biggest trial I have ever been given. I will say being on this board brought me so much information but also friendship that is also priceless. No one gets this but us. This silent...invisible pain in the ....... !!! (body)

Good for you to help her. Good luck and please do look for the Members Toolbox to the right in resources to read all the tricks people have tried and worked. JUST KNOW THERE IS NO EASY FIX. NO MAGIC. AND WE ARE NEVER** NOT IN PAIN, IT IS JUST LOWERED TO BE BEARABLE SO IT CAN BE PUSHED TO THE SIDE SO A LIFE CAN HAPPEN.

All my best,
Nancy B RN
 
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dawncostella replied to booch007's response:
Nancy,

I wanted to say I bought the newest book from Dr. Starlanyl and I find it very interesting. I am learning a lot. Thanks for always mentioning them.
 
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katmandulou responded:
Ho wanttohelp, and welcome!

When my doc first mentioned FM (15 months before my diagnosis) my DH went on-line and did a bunch of research. When the dx came, he sent me a ton of links for me to read. It helped me tremendously, I could see what I was up against and had some really good talks with my doc and his PA. I wish I could find that email...

I had (have) a lot of relatives who didn't believe "anything is wrong with (me)". HA! Have your wife check out http://www.butyoudontlooksick.com/ . It has good tips for us, especially The Spoon Theory - it will help her explain to people what it's like to be in her body. Some days I think my DH thought I was making it up. It's been nine years since I boarded this nasty little train, and I'd love to get off at the next stop.


Does she have a good relationship with her doc? Sometimes you don't, and if the doc doesn't listen what's the point? Mine has a PA, and my visits alternate between the two. They talk about each patient, and it keeps their message consistent.


Have her ask her doc to check for a Vitamin D deficiency. Sounds simple, but we who live in the northern hemisphere are usually lacking in D.


I wish you both the best day you can possibly have,
Lou


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