Doctors advice and newly diagnosed

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WolfQueen

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Hi everyone. About a year and a half a go I was diagnosed with berlotti syndrome. I struggled with the pain and was put on morphine but recently I was diagnosed with fibromyalgia. I am seeing a specialist now who is helpful. I am getting a sit down board for the top.of my bath to sit as it can hurt if I stand too long. I'm trying new ways to try and help myself. I am looking into meditation and also reading a best seller to find peace and apparently ti chi is good for pain which I will be trying. I cant walk round for too long when I'm out as my balance will go off and I get exhausted so easy and then there is more pain. My doctor thinks coming online to talk to people who have fibromyalgia will make me feel not so alone in this as times I do. I just wanted to introduce myself and hopefully not feel like im alone through this. I have a great support system from my son and husband.
 

Jemima

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Hi WolfQueen,

Welcome - it's lovely to have you here. I think your doctor's advice is great, and you've landed in a good spot. This forum is fantastic for useful info and a whole lot of empathy, insight, and humour - depending on what's called for! I hope you find the kind of support that you need.

I just looked up berlotti syndrome, having never heard of it. I can imagine that must cause you significant back pain and mobility issues. It seems to be incredibly common that those with spine problems of one kind or another develop fibromyalgia - whether this is coincidence or connected, I guess we won't know until the right research happens! I have some spinal issues from an old horse riding accident, but I'm pretty sure my fibro came along first. I commiserate that you're dealing with both, but hope that the new diagnosis puts you on a path towards finding new things that help.

Our epic forum moderator Sunkacola wrote a great post outlining her advice for managing fibromyalgia. You'll find it pinned at the top of the General Discussion section of the forum. Like you, I also found meditation and relaxation techniques helpful - I think stress management is really key to getting a handle on this condition, and lessening the frequency of flares. Whatever you decide to implement as you go forwards, I'd say take things nice and slowly - without big changes or trying everything at once - and be ultra self-compassionate, whether you're making progress or not. Most of us seem to find that we can make a pretty decent difference to our fibro symptoms by layering up management strategies, but it's a case of experimenting to find what works, because we're all so different!

Best of luck to you. Feel free to ask, vent, or whatever you need in this space!
 

James Vanetten

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Hi, I have fibromyalgia and I found what helps me is to put on the head phones lay in bed in the dark and listen to healing music for pain,or fibromyalgia music on u-tube and that helps calm me down,relaxe, and it takes the pain away, and it helps fall asleep.
I am taking a muscle relaxer, gabapentant and venlafaxine.
 

Nika1995

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Hello ,

I've also been recently diagnosed with Fibromyalgia and right bertolotti syndrome at the same time. I used to have horrible sciatic pains in my right leg since childhood but my GP would tell that it's just growing pains. My fibromyalgia started 6 weeks after my baby was born and I went from healthy active 26 years old to not being able to walk for more than 5-10 minutes.My legs are constantly burning and twitching and I get flare ups when the weather is changing then I will get brain fog , and burning in joints all over my body. I take 30 mg of Amitriptyline as I'm breastfeeding doctors wouldn't give me anything else so it does help with sleep but not so much with pain I think I need higher dose. When I was diagnosed in June my rheumatologist mentioned Tai chi , cutting off caffeine and pacing yourself throughout the day. I go see chiropractor once a month and it helps with tender points as he works on my muscles. My advice would be don't cut off all physical activity because you will notice your ability to walk will get worse. Try to manage same activity level throughout the day.
I'm very sorry it's a terrible terrible thing to have I wouldn't wish it to anyone.
 

sunkacola

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Hello ,

I've also been recently diagnosed with Fibromyalgia and right bertolotti syndrome at the same time. I used to have horrible sciatic pains in my right leg since childhood but my GP would tell that it's just growing pains. My fibromyalgia started 6 weeks after my baby was born and I went from healthy active 26 years old to not being able to walk for more than 5-10 minutes.My legs are constantly burning and twitching and I get flare ups when the weather is changing then I will get brain fog , and burning in joints all over my body. I take 30 mg of Amitriptyline as I'm breastfeeding doctors wouldn't give me anything else so it does help with sleep but not so much with pain I think I need higher dose. When I was diagnosed in June my rheumatologist mentioned Tai chi , cutting off caffeine and pacing yourself throughout the day. I go see chiropractor once a month and it helps with tender points as he works on my muscles. My advice would be don't cut off all physical activity because you will notice your ability to walk will get worse. Try to manage same activity level throughout the day.
I'm very sorry it's a terrible terrible thing to have I wouldn't wish it to anyone.
I made a post with a lot of ideas for managing fibro without using drugs, and you may want to check it out. I hope something there helps you!
 

Creola17

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I'll just add that changing my eating habits has really helped me to have fewer attacks. I stopped eating sugar, dairy, grains and night shade vegetables . I LOVE the food and learning new recipes. Cheese bread, candy, I make it all. My husband loves it and feels really good (he's 77 but feels like 50). And you end up losing weight without trying.. Try and stay away from drugs, they only cause other problems. There are many supplements that help. Also tropicals can be wonderful.
It still sucks big time to have this pain but try to look at the positives like having a great husband. I am very lucky.
(((gentle hugs)))
 

Creola17

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I can't believe I forgot the most helpful medicine for me has been marrijuana. CBD, eatables, and RSO. For pain, attitude and sleep.
 

JayCS

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LDN completely cured me now for almost a year
I've re-skimmed scientific evidence (20 pubmed-studies, most 2018-2020, the earliest 2009) and many forum posts here and elsewhere on LDN.
I'd suggest it's nothing to plug too much, as evidence is very limited (too small studies) and some people are not helped by it or have quite some sfx;
but something to try, as the risks are low, it's cheap, some are helped, there is also no evidence against it, some suggest that it stimulates the body to take over, so you can maybe reduce the dose after a time. (Can you?)
The newest pubmed-study (2021) agrees: "FM may also be treated with LDN. The main limitation of the findings was lack of a randomized control group treated with placebo."
There are definitely more testimonials for it than for "my" GABA.
The biggest impression I have from all the forum discussions everywhere is that the testimonials are so exuberant that it turns people off of trying it and that moderators often try to tone it down -
similar to other topics with ardent supporters like guaifenesin or thyroid supposedly being the real issue behind FM, which also rely mainly on testimonies.
Thinking about it: That is one of the reasons for having shoved it off my list, which is unfair I spose.
Maybe if the testimonies toned it down, its image/repute would increase.
Gonna have a look at the testimonies for and especially against more closely now - however maybe not on the Research Trust site, or only very critically.
 
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JayCS

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Ha, interesting. I actually caught myself getting carried away by the idea of a miracle cure... really, I was thinking: Wdnt it be great only having to take LDN, leave the 13 supps, the hours of self-treatment and treatment behind me... Oooooh yessss....

So, I went another route first, was getting really into it and interested: First: It's very hard to get here. My pharmacy can't get it for me and I can't get it from any pharmacy via my usual online pharmacy price comparison portal, up to now I've "only" found one compounding pharmacy far in the South that said it does it. Maybe there's a compounding pharmacy closer, not sure how to work that out. One on a forum got it from "overseas", but warned they wdve preferred a doc to help them. Someone else got the 50mg pills prescribed by their doc and tried quartering, but that was still too much - there might be a workaround there.
The compounding pharmacy I phoned and asked how best to get a prescription willingly shared the name of a doc who'd prescribe it. I'd also found another doc who does. Both also in the South. However both come across on their websites, on youtube and on a doc rating platform as emotional, exuberant, naturopathic/alternative, evangelizing (is there a better word?) and polarizing. Whilst the first compared herself to US functional docs, her methods & explanations are far off into the esoteric areas (e.g. photon therapy), her main med for FM is guaifenesin (not LDN), she "knows" her fibromyalgia was caused by Lyme disease, explains everything oversimply, "knows everything", has many exuberantly positive ratings, but also many who describe her as chaotic, unstructured, not able to adequately explain when questions are asked. some of her explanations are good, some fanciful/weird. The other one is a radical vaccination opponent, gives a speech on a demonstration about a pediatrician who was charged with waiting too long before a baby was taken to a clinic cos of malnutrition. That pediatrician believes in indigo children, that the measles virus is not responsible for measles and "breatharianism" (we could nourish ourselves from sunlight alone).

Now I'm definitely not at all saying that the people/docs who advocate it are all like this at all, but it started me wondering if a) the evangelizing exuberance causes the polarizing and if the people who do this are susceptible to LDN, because it is a bit nonconformist & a bit mysterious, and perhaps also they are having a strong placebo effect (which is good for them), or praps the other way round.

So I was interested not in what a pro-LDN website had to say, but first one FM-forum. The result isn't catastrophic, but sobering: Of 20 people 5 (25%) found it pretty good to brilliant (some of these loved exclamation marks...), 6 (30%, together 55%) found it helped a bit along with other things, and sfx were OK, however 7 (35%) found the symptoms got considerably worse, either immediately or after about a month or so and 2 (10%, together 45%) "had" no fx at all (one of them cdnt remember any).
3 of the 5 people who found it good had been on it for 2, 6 and 8 months - I wdnt rule out that they didn't post any more, because they were feeling too good. It didn't work for the only man amongst them, FWIW. One person was narked about how much one of the main proponents was plugging it and asked her to refrain from doing that.
The main doc/writer I've now seen using/prescribing it is the fibromite Ginevra Liptan.
A good neutral link I found along the way was once again healthrising, using the positive words "an impressive grassroot movement" for LDN proponents.
The other side to that is the way LDN proponents often tout it, saying "check it out", "look into" and "spread the word", "the reviews are very subjective to say the least" which in combination with the aura of a miracle cure (cured, all symptoms) makes it tough to hear and not nice. OK, it is nice to get some hope first, like me yesterday, I was flying a bit, "what if?" - brushed my usual skepticism aside a little, but I don't mind playing around, and I was guessing I'd be finding a bit of a snake pit (is there a better one?). Esp. when so many people are having a tough enough fibro-life and then people do try it and it gets worse ... and just to make sure why I say snake pit, I quote: "its getting really miserable", "worsened my FM unbearably", "I became severely nauseous and heaving" &"I think it may have caused my liver enzymes to elevate", "6 months later and things are just worse" and "Side effects are baaad pain". The upside of this is, you can just stop it, without even weaning it off and these effects stop quickly.
Some said that LDN catalyzes your body to produce it's own pain killers or similar, so you can reduce it, but others you have the same pain if you stop it (e.g. the 2009 study), so it seems it's fogging over and not curing. One of the healthrising webpages summarizes about Younger's 2013 study with 31 women "LDN was helpful in reducing about 30% of the pain in about 60% of the patients." which sobers up the implication that it can reduced 100% of the pain in 100% of the patients. I don't think my slipshod forum testimony statistics contradict those findings of Younger's studies (he's at Stanford by the way), but I'm disconcerted that this study did not find any of the harsh sfx quoted above. Also on healthrising it was implied that it your FM maybe mainly has an autoimmune component (seemed to be found in one of the studies), then the likelihood it might work might be higher. I also get the feeling that maybe a mood component makes it more likely, and that if works on one part of fibro - if all the other symptoms come from that, it may work a bit 'miraculously', but we are too different to bet on that.
Bottom line I think: No "need" to plug this stuff especially. It may be worth trying, but it may have bad (s)fx. If you do try it, it sounds better to not keep to the 4.5mg dose of Younger's studies, even if docs have sometimes forced people to: I'd start with .5mg or if possible even less and increase slowly, finding your own dose: that may be part of the "secret". Apparently even small differences in dose make a lot of difference. The people it was helping were taking 9mg, 3.8mg or 1mg, one who it wasn't had gone down to 0.1mg. (Reminds me of getting a 2mg melatonin ER pill prescribed and breaking off 1mcg bits (5%) - and that still being too much for me, almost the same zombifying effect as the 2mg ER or the 1mg without the ER.) Normally you'll need to find a doc who'll prescribe it and a compounding pharmacy to make them (if you haven't got the unlikely possibility of getting the 50mg prescribed, grinding them and putting that into 11 equal small heaps ... and re-dividing each of those into 9 further equal heaps... probably needing a magnifying glass or an analytical balance...).
 
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sunkacola

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Jay, I find your post above very interesting, and thanks for those facts. Personally, if a "study" involves only 20 people or 31 people I will pretty much dismiss it out of hand, because that is not going to be indicative of anything real that affects millions of people. And even in those studies it certainly didn't help everyone by any means.
I would have to see a lot more convincing work before assuming that it has widespread application advantages for people with FM. I would never oppose someone wanting to try it, nor of course refute it if someone said they use it and it helped. But if it were the cure-all that some say it would be used by everyone all over the world and they wouldn't need fancy proselytizing websites to promote it. They'd be using all their energy trying to keep it in stock.
 

Creola17

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JayCS first of all THANK YOU. Figured it was too good to be true but got a little excited anyway. You sure do your research! I love researching as well.
Funny, didn't think I'd make it through the long post but I did and I'm so very stoned right now.
Oops TMI? Lol
 

JayCS

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JayCS first of all THANK YOU. Figured it was too good to be true but got a little excited anyway. You sure do your research! I love researching as well.
Funny, didn't think I'd make it through the long post but I did and I'm so very stoned right now. Oops TMI? Lol
🤗 Yeah, I apologize for the length of my latest posts, I'm already summarizing as much as I'm able...
see?
Anything else/less in bold? I should be able to edit it for about 8 hours from now. (More 🙀 linked on "JayCS's fibro blog", on 2021-10-26.)
 
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JayCS

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ti chi is good for pain
Yep, has real scientific evidence for FM too. For me the long moves'd usually be too painful, in qigong anyway, and they are similar, some mean the same with it. I do around 1h/d of exercises, but they need to be short and spread out over the day.
Yesterday I could manage to touch my toes again, the time it takes's been getting shorter and shorter! - Ehm: legs straight... ;-) after I was missing 10cm last year.
(Yeah, I can short too...)
 

Creola17

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I started tai chi this week. It's fun.
 
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