Lupus and fibromyalgia

[Dots]

Who here has a relationship with pain? The kind of pain that brings you to your knees and makes you wish you were dead so you didn't have to suffer anymore. The kind of pain that makes you think torture would be a tolerable alternative, because then at least you'd know who your tormentor was. Then at least you could fight them. The kind of pain that makes you dysfunctional and when you have flareups it's so bad that you can't even recognize yourself, because you can't recognize your thoughts. You can't comprehend them.

I have this relationship with pain and I can tell you I am losing the battle. I wanted so badly to be set free. I told this to my fiance today and after an hour of him pleading with me to go back to the doctor, he finally conceded that it would be useless. Doctors have done very little for me and my conditions. Because even doctors don't understand pain when it appears nearly invisible. When it's not gashes and bruises and a knife through your skull.

And they give you anti-inflammatories and steroids and in some cases anti-depressants, but it's just a band-aid. In some cases, it seems like a placation. And if you don't scream and shout and whimper and cry, it must not be that bad. But trust me, I'm screaming on the inside.

 

[MisterBGone]

I do, but admittedly, it’s not the same as yours . . . (& I’ve had about 5-6 years of “practice,” with it; that is, since I’ve been receiving ‘treatments!’): though not that they’ve done much beyond be better than if you did not get them... Also coupled with the fact that I have an unusually high level of, or for pain-tolerance (I used to get some cavities filled if they were surface enough without Novocain (though I believe that those days are long gone).
I can’t believe the torment it seems you’ve been suffering. I presume you’ve done your best to describe and transcribe this to the doctors. Maybe it’s time to find some better ones? Can you seek a referral to someplace like Mayo Clinic, where a team will handle your case? And come up with a plan. . . I know it’s easy to feel &/or be defeated when you’re in the midst of this, and have gone through the stonewalling’s & such that you’ve gone through. But just because some are dumb and don’t, or won’t listen — does not mean that there aren’t those out there who will. Who can offer meaningful solutions to the chronic pain and acute spikes in crises . . . There are those docs out there who get off on finding discoveries to problems others have been unable or unwilling to resolve. You’ve just got to find one of them! Anyways, feel for you, glad you got to talk to your guy. Sorry 😐 you’re still not feeling any better— but don’t give up hope! It does exist (you just can’t see it yet...) :^))

 

[Dots]

I do, but admittedly, it’s not the same as yours . . . (& I’ve had about 5-6 years of “practice,” with it; that is, since I’ve been receiving ‘treatments!’): though not that they’ve done much beyond be better than if you did not get them... Also coupled with the fact that I have an unusually high level of, or for pain-tolerance (I used to get some cavities filled if they were surface enough without Novocain (though I believe that those days are long gone).
I can’t believe the torment it seems you’ve been suffering. I presume you’ve done your best to describe and transcribe this to the doctors. Maybe it’s time to find some better ones? Can you seek a referral to someplace like Mayo Clinic, where a team will handle your case? And come up with a plan. . . I know it’s easy to feel &/or be defeated when you’re in the midst of this, and have gone through the stonewalling’s & such that you’ve gone through. But just because some are dumb and don’t, or won’t listen — does not mean that there aren’t those out there who will. Who can offer meaningful solutions to the chronic pain and acute spikes in crises . . . There are those docs out there who get off on finding discoveries to problems others have been unable or unwilling to resolve. You’ve just got to find one of them! Anyways, feel for you, glad you got to talk to your guy. Sorry 😐 you’re still not feeling any better— but don’t give up hope! It does exist (you just can’t see it yet...) :^))

It's been 10 years of this but my flare ups come in cycles. I've been in a bad one for the past 7 to 8 months. Can I ask what causes your pain? And yes its severe pain. And I no longer think it's worth living. Why should I? Seems people are kinder to animals in pain. After 10 years and no hope, what else is there? People dont seem to be able to comprehend what constant high level pain is like. They dont seem to understand how it affects your livelihood your identity your body. I dont know. I'm just tired of trying.

 

[may71]

You weren't explicitly asking for advice, so please ignore the following and accept my apologies if advice is unwanted.

I hope things can get better soon

----------------------
I recommend acupuncture and traditional Chinese herbal medicine here so often, I forget who I've recommended it to.

In any case, these treatments can definitely help with fibro and lupus

https://www.suicideforum.com/commun...on-drug-treatments-effective-for-pain.161964/

https://www.suicideforum.com/commun...orts-article-on-treating-chronic-pain.156787/

This book might help. "Curing Fibromyalgia Naturally with Chinese Medicine"
http://www.bluepoppy.com/cfwebstore/index.cfm?fuseaction=product.display&product_ID=372&ParentCat=33

I haven't read this one, but I've read other books in the series. You may be able to get this from your library (if your library is open), but you would probably need to do it through ILB.

I can say more on the subject of acupuncture and traditional Chinese medicine if you are interested.

 

[Dots]

You weren't explicitly asking for advice, so please ignore the following and accept my apologies if advice is unwanted.

I hope things can get better soon

----------------------
I recommend acupuncture and traditional Chinese herbal medicine here so often, I forget who I've recommended it to.

In any case, these treatments can definitely help with fibro and lupus

https://www.suicideforum.com/commun...on-drug-treatments-effective-for-pain.161964/

https://www.suicideforum.com/commun...orts-article-on-treating-chronic-pain.156787/

This book might help. "Curing Fibromyalgia Naturally with Chinese Medicine"
http://www.bluepoppy.com/cfwebstore/index.cfm?fuseaction=product.display&product_ID=372&ParentCat=33

I haven't read this one, but I've read other books in the series. You may be able to get this from your library (if your library is open), but you would probably need to do it through ILB.

I can say more on the subject of acupuncture and traditional Chinese medicine if you are interested.

I appreciate the thoughtful links, but I have tried everything from acupuncture to diet changes to prescriptions. Good god, if I had the means to fly to some miracle shaman in some obscure location I would.

If I am honest, one of the reasons I avoid talking about my medical situation is because I get a lot of people suggesting treatments or those who do not understand the severity of the illnesses. I have had people tell me just hydrate more and you'll be all cured. It's a really scary thing to put out there because so many people believe it's your fault and you're just not doing enough. Btw, I am not suggesting this is what you are doing and do not think it is. I guess I just went off on a little tangent.

 

[may71]

People may offer treatments with good intentions, but you probably know a lot more about your condition than the people making the suggestions. I guess some might be offering suggestions in the spirit of being judgmental, which is really awful.

I could still try to make suggestions, mostly in the spirit of leaving no stone unturned, and not giving up on trying to help. I think it would be reasonable though for you to just say, "I'm tired now, I don't want any more suggestions".

Sending hugs

 

[Dots]

People may offer treatments with good intentions, but you probably know a lot more about your condition than the people making the suggestions. I guess some might be offering suggestions in the spirit of being judgmental, which is really awful.

I could still try to make suggestions, mostly in the spirit of leaving no stone unturned, and not giving up on trying to help. I think it would be reasonable though for you to just say, "I'm tired now, I don't want any more suggestions".

Sending hugs

Thanks May. I definitely don't think it's always in the spirit of being judgmental - it's just depressing as I've been in pain for so long and have done everything I can.

It's sweet that you'd like to persist, but yes, I will go with I'm tired and don't want suggestions.

 

[MisterBGone]

Good God! 7-8 days, let alone weeks. . . Would be “hell on earth!!” (I couldn’t imagine months. . .) “Jesus!” Did I say that, yet?

 

[may71]

Hugs @the.end.ish

 

[Ash600]

I've encountered numerous people over the years suffering with lupus or fibro, witnessed how these conditions have progressed over time and the effects it has upon those suffering with it.
I agree with you. quite often doctors seem to follow the band aid approach with a hit and hope mentality. Pain and the degree of it being experienced is obviously a subjective matter which can add to the difficulties in making an assessment. What I've seen so many times, are doctors blindly following an alogorithmic approach based on established guidance. But here's the thing, it's guidance, not somehing to be religiously adhered to. Listening to the each patient, treating them on an individual basis is so often frustratingly missed.

All I'm saying is that I understand your frustrations, and know where you're coming from, @the.end.ish

 

[Dots]

I'm frustrated today because of pain and irritable and angry and even more angry at myself for being angry.

This high intensity pain produces anger, impatience, etc and it makes me emotional and irrational. and I hate being these things. I hate not having control over my state of mind because I have no control over my body.

I hate taking it out on others and yet sometimes I can't stop myself. I hate being unable to appreciate moments for what they are and people for who they are because everything is pain tinted.

I hate it. I hate not knowing how I would feel about something if I were just pain free, if I were just living. I want to cry.

I really don't want to be on this planet today.

 

[Ash600]

And they give you anti-inflammatories and steroids and in some cases anti-depressants, but it's just a band-aid. In some cases, it seems like a placation.

That's true, they just hit you those things as well as muscle relaxants, anticonvulsants etc. They are just a temporary block to hold things at bay. Another approach is obviously required, I mean that's a no brainer, instead of looking at the symptoms, go for the cause instead.
One possible solution is research into the link between prediabetes and fibromyalgia. Those with elevated blood sugar levels and treated with the antidiabetic drug, metformin, have in general reported lower pain scores caused by fibro. However, sadly its not a silver bullet as there can many causes of fibro so naturally each case needs to be assessed on an individual basis.

Sorry to intrude with this, as I noticed in an ealier thread your reluctance to hear about alternative treatments. Just thought I'd put it out there as to what the latest research on this is in case you were interested.

 

[Dots]

That's true, they just hit you those things as well as muscle relaxants, anticonvulsants etc. They are just a temporary block to hold things at bay. Another approach is obviously required, I mean that's a no brainer, instead of looking at the symptoms, go for the cause instead.
One possible solution is research into the link between prediabetes and fibromyalgia. Those with elevated blood sugar levels and treated with the antidiabetic drug, metformin, have in general reported lower pain scores caused by fibro. However, sadly its not a silver bullet as there can many causes of fibro so naturally each case needs to be assessed on an individual basis.

Sorry to intrude with this, as I noticed in an ealier thread your reluctance to hear about alternative treatments. Just thought I'd put it out there as to what the latest research on this is in case you were interested.

It's not an intrusion. I dont have prediabetes or high sugar levels so I'm not sure about it. I think the fibro is thought to be caused by the lupus. I do appreciate being informed of new research about my conditions though especially if it veers toward actual pain relief.

If I'm honest I wish I could take opioids but even when I was on morphine it was like a distraction from the pain not a pain suppressant.

 

[Ash600]

With lupus being an immunological condition, as no doubt you're aware of, I wouldn't be suprised if it was culpable in setting of fibro. I'm not sure if by controlling that using immunological agents such as rituximab or belimumab would benefit but maybe dampening down the effects of Lupus would have a knock on effect on quieting the symptoms of fibro.

Sometimes that is the effect with opiods, they offer a mere distraction rather than a solution.

But, any developments in terms of research I come across, I'll let you know and hope it'll be of help to you.

 

[Acy]

...even when I was on morphine it was like a distraction from the pain not a pain suppressant.

I am by no means an expert on pain and pain medications...Your experience with morphine sounds similar to my experience with oxycodone, which I think is much less potent than morphine. I could feel that I was in pain but it was like I “didn’t care about the pain.” (I didn’t like that experience.) I think with chronic pain just having some time without it would probably be a relief for you.

I’m sorry you’re in a great deal of pain, chronically. I hope the flare ups settle and you can get some relief.

 

[Dots]

With lupus being an immunological condition, as no doubt you're aware of, I wouldn't be suprised if it was culpable in setting of fibro. I'm not sure if by controlling that using immunological agents such as rituximab or belimumab would benefit but maybe dampening down the effects of Lupus would have a knock on effect on quieting the symptoms of fibro.

Sometimes that is the effect with opiods, they offer a mere distraction rather than a solution.

But, any developments in terms of research I come across, I'll let you know and hope it'll be of help to you.

Thank you.

 

[Dots]

I am by no means an expert on pain and pain medications...Your experience with morphine sounds similar to my experience with oxycodone, which I think is much less potent than morphine. I could feel that I was in pain but it was like I “didn’t care about the pain.” (I didn’t like that experience.) I think with chronic pain just having some time without it would probably be a relief for you.

I’m sorry you’re in a great deal of pain, chronically. I hope the flare ups settle and you can get some relief.

I did and didn't enjoy the experience. It was a nice high, I suppose. Yes, I consider any moment of relief pure bliss... I try to live in that moment for as long as possible.

Thank you for your well wishes. I think I need to take the AIP diet seriously again and see if it offers any relief.. though it didn't before.

 

[Ash600]

Thank you.

No worries, I know of a few people who suffer from lupus. Even by looking at their meds and speaking with them, it's still hard to gauge exactly the degree of discomfort they have to endure. So anything that can help to at least take the edge of things.....

 

[Dots]

Have a doctor appt today. Got 4 hours sleep. I dont have any spoons to handle the day to come. But I really need this appt. Why didnt I just take the full day off work? Oh well, hindsight, eh.

 

[Ash600]

Yeah hindsight. On one hand a wonderful thing, on another something which can gnaw away at your bum.
Hope you manage to get through the day the best you can, and your appointment goes well.