How to reduce pain! Sciatica?

[wiserlady]

Hello, hope you feel better today. For what it is worth before I was diagnosed I figured out that taking steroids helped me feel a lot better and did this three times. Each time for a week weeks or a month of so. Each time starting at a high dose and gradually taking less. Each time after a few days I would feel better, then feel virtually normal again for quite a while and then as I lowered the dose it would come back, or it would return when I came off them. My doctor is not interested in any of this and just tells me to put up with it all. Hard to do when it';s you and it affects you a lot physically and pain wise. It changes your life. I would have to get prednisolone myself now secretly imported, as cannot get them the usual way. I noticed when taking the steroids that it was a balancing act. And I have read of people on other forums who take them to help with this, sometimes long term eventually with a maintenance dose. But they have to buy them and work it out themselves. Steroid tablets are very cheap to produce so this myth that you must be careful because they might send you fakes makes no sense with cheap tablets. Its cheaper for them to send you the real thing. Every day we have to gauge how we are an d make decisions based on that. Not easy. Especially when the brain fog kicks in.

 

[sunkacola]

Just because I feel it is important, I want to caution everyone, as I have done in the past, about taking steroids. Steroids do nothing to address any problem the body has, and instead they over-stimulate the adrenal glands and that makes you feel better for a while but it does nothing that is actually helpful and they have terrible long-term effects.

Used regularly, your own system of adrenal functioning will become dependent on the steroids and will cease to be able to function without them.

Using steroids can, among many other things, increase the risk of heart disease, cause gastro-intestinal bleeding, blurred vision, and increased muscle weakness, stimulate the growth of certain cancers, and worsen other medical problems including chronic pain syndromes such as fibromyalgia, as well as significantly lowering the immune system to the point of making a person far more at risk of disease or infection (which is especially unwise in the age of Covid).
Steroids taken orally (by mouth) have also been closely linked to liver disease.

There are so many other things that are safe and effective ways of managing fibromyalgia that I always want to encourage people not even to consider using steroids as a response to FM.
It is in my opinion, and the opinion of many others who know a lot more about the body and its functioning than I do, a very unwise way to manage this or any other condition.

I would especially warn people off from getting steroids against doctor's orders, and/ or secretly imported from places out of the country, on the internet, or through uncertain outlets, which any place secretly sending them or selling them to someone without a valid prescription would be, as all of these are likely to be scams or equally may be selling something even more dangerous than steroids.

 

[wiserlady]

As someone who owns and runs a busy business and was in a great deal of fibro pain, barely able to move and crying a lot, I had no choice but to get hold of steroids and take them. I did research on it all first and am more knowledgeable than the average person. It was that or having my business close down at huge financial loss or committing suicide. I also had to worry about my four dogs who totally rely on me. I got steroids from 3 different suppliers -other countries - all of them were good quality, and it makes no sense to say they may give you something else, as it is very cheap to manufacture them and it would cost them more to swap them for something else!! My adrenal glands did not shut down, I made sure of it. By taking breaks from the steroids regularly when able to.

It is very easy to say do not get these because the doctor said not to. But the doctor does not offer an alternative other than you losing your business, being barely able to move and crying a lot.

It also depends a great deal on what causes your fibro. In my case it came on when I was put on monkelust tablets. I was fine before. One minute I was taking them then days later in excrutiating pain. Obviously I had the sense to stop taking them as soon as I realised, but the doctors made a fuss about that insisting it would help with my asthma! Like it would be worth it for me to be in such a state for such a tiny gain. If you research churg strauss and fibro there are lots of accounts of people using steroids, usually for a year or two until it is in remission, and if you go to forums that review medication most who take steroids for these things say they have been of great benefit. But of course if you are doing it alone you need to know your stuff and do it sensibly. Some are not able to do that.

As for the worries with steroids. I take vitamin d and vitamin k so do not have to worry about my bones. I watch what I eat and rarely eat bad carbohydrates or fats. So do not have to worry about getting diabetes. Before I even started all this I made sure I lost two and a half stone in weight. After a lot of doctors at my surgery were confused and clueless about why I was in such a state it was me that did the research and said I think it is fibro. It was me that insisted I get sent to a rheumatologist. My doctor was going to send me to a lung specialist. Even though it was not affecting them at all and would have been of no benefit. And no it would not have been possible or better to change doctors, had thought of all that. The rheumatologist said what do you think it is, he thought it fibro and so did I. But he then says all he can offer me is some painkillers I can buy in the chemist or get from doctor. And he will not be seeing me again. I live in the UK were it costs the NHS about £200 every time they send you to talk to a consultant, and a lot more if they do tests etc. So yes, I had to be active myself and make my own decisions.I know a lady who was in a similar situation, and she went on steroids permanently adjusting her own doses because of all this. She is now 80 and still doing well, never regretted it. Never got any of these things we are warned about if you take steroids. Because she did research and took care. I am not on steroids at the moment, but if I need to be again I will, I won't ask permission or advice, because the doctors never offer an alternative which is acceptable. Nor do they have to live with the consequences.

 

[Creola17]

wiserlady, please do some research on steriods. You are doing great harm to your body!

 

[JayCS]

Whoopsie....! Now this might be the point to stand above things, just smile and keep in peaceful cordial warm contact....?
@Creola17: As she's written, wiserlady has done lots of research, knows what she's doing, but can see no alternative at the moment, and is willing & needing to take a certain amount of harm upon herself. In the first 6 months of my full flare I tried what all the docs said, for my wife and for my employer, feeling indebted to get a lot of money every month for "nothing", so even going against my knowledge of my own body. Only after it became evident to everyone that they'd/I'd harmed myself even more doing this did I start to reject and look for alternatives and then could gradually trust my own judgement. If I had my own business I don't know what I'd be prepared to do. Suicide is no alternative, and if steroids put a stop to that then we're talking business, they are a life-belt. And in the meantime looking for alternatives and perhaps preventing going on them again - what more can anyone ask for? - When self-harmful thoughts and actions happened to me, then in my life I knew something fundamental needed to be changed and I worked on that.

 

[wiserlady]

Have done plenty of research on the subject. Some doctors give steroids for fibro.

 

[wiserlady]

Jaycs. Thank you. The most sensible and non judgmental post I have seen since signing on this forum.

 

[wiserlady]

Whoopsie....! Now this might be the point to stand above things, just smile and keep in peaceful cordial warm contact....?
@Creola17: As she's written, wiserlady has done lots of research, knows what she's doing, but can see no alternative at the moment, and is willing & needing to take a certain amount of harm upon herself. In the first 6 months of my full flare I tried what all the docs said, for my wife and for my employer, feeling indebted to get a lot of money every month for "nothing", so even going against my knowledge of my own body. Only after it became evident to everyone that they'd/I'd harmed myself even more doing this did I start to reject and look for alternatives and then could gradually trust my own judgement. If I had my own business I don't know what I'd be prepared to do. Suicide is no alternative, and if steroids put a stop to that then we're talking business, they are a life-belt. And in the meantime looking for alternatives and perhaps preventing going on them again - what more can anyone ask for? - When self-harmful thoughts and actions happened to me, then in my life I knew something fundamental needed to be changed and I worked on that.

Jaycs. Thank you. The most sensible and non judgmental post I have seen since signing on this forum.

 

[JayCS]

Well... we do all do our best here, each in our own way... may take some time to see that...

 

[sunkacola]

Well... we do all do our best here, each in our own way... may take some time to see that...

No one here is out to harm anyone else. We are all here to help each other. Because we are human, sometimes the things we offer to help fall short for one or another person, and sometimes they are the things that make a huge difference to that other person. Since we are unable to know each other in person, we can only do our best with what little we know.

Anyone who is actually trying to not help, or to do harm, is bumped off this forum pretty fast.

As with anything else, a person needs to make their own judgements and take what helps and leave the rest.
But it is nice to come to the realization that everything offered is done in good faith and with the desire to be helpful.

 

[wiserlady]

No one here is out to harm anyone else. We are all here to help each other. Because we are human, sometimes the things we offer to help fall short for one or another person, and sometimes they are the things that make a huge difference to that other person. Since we are unable to know each other in person, we can only do our best with what little we know.

Anyone who is actually trying to not help, or to do harm, is bumped off this forum pretty fast.

As with anything else, a person needs to make their own judgements and take what helps and leave the rest.
But it is nice to come to the realization that everything offered is done in good faith and with the desire to be helpful.

Yes I knew that. The great thing about humans - and the worst thing about them - is that we all vary such a lot. Young, old, bright, stupid, boring, exciting, we all mix together.

 

[JayCS]

the worst thing about them - is that we all vary such a lot. Young, old, bright, stupid, boring, exciting, we all mix together.

Old, stupid and boring is the pigeon-hole I feel most comfortable in....

 

[sunkacola]

Old, stupid and boring is the pigeon-hole I feel most comfortable in....

Hmmm. Well, I don't know about boring since I don't know you in person, and you may be old. But stupid? I refuse to believe that after seeing how thoroughly you can research something and how eloquently you can put it here for the sake of others on this forum!

 

[wiserlady]

You don't sound stupid or boring to me.

 

[JayCS]

Old, stupid and boring is the pigeon-hole I feel most comfortable in....

I was underhandedly implying that I am generally uncomfortable with (= allergic to) people/anyone being called stupid or boring.
Even including that being entailed when people are called "not stupid" or "not boring",
like teachers calling a certain pupil 'not stupid', thus implying others are, which is bad for their self-perception & thus motivation.
To me it's a matter of human solidarity and indivisibility - elsewhere and here on this forum.
I'm wary of myself/us being split by splitters.

Spoiler: "Unexpected" behaviour by someone "intelligent"...

Or even people being called 'intelligent' to "bond" (expression?) them to a certain way of expected behaviour.
As a teenager I sometimes put on make-up, occasionally even in school, e.g. something moderate like a "3rd eye".
A teacher who mocked that, saying she would not expect this from an intelligent person like me
got the angry answer that "I'm not f-ing intelligent". For that I was of course thrown out of class. We "made up" after tho.