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Undiagnosed, looking for alternatives


#1

Hi all, I’m new here. I think I have fibromyalgia. My Rheumatology appt is in June but my health issues have been ongoing for 11 years now. I’ve looked at the updated diagnostic criteria and I more than meet that. I’ll try to do a short backstory so you can have an idea.

Breast cancer 11 years ago
Many, many surgeries connected to that including reconstruction
Oophorectomy 10 years ago (so in menopause at age 26)
IBS starting 10 years ago
Migraines since age 2 but have been incredibly severe for the last 7 years
For the last 2 years my scalp is incredibly sensitive and painful
For the last 2 years my body has been getting more and more painful
Insomnia for the last 11 years
Anxiety and depression slowly getting worse over the last 5 years

I think that covers it. Currently I see a Neurologist for my migraines and they’ve blown me off completely, as has my PCP which is why I’m seeing a Rheumatologist.

I have been getting massages weekly which helps my body pain a ton. A therapist I love has been hard to get into because of how far she is from me so I’m working on getting into someone more locally.

I’m actually getting approved for short term disability from work right now because I cannot work 45-50 hours anymore due to the amount of pain I’m in.

I wanted to join here to see if anyone has suggestions for me or advice that I could follow? I’ve read other threads and I’ve been doing heat and trying to do some yoga as well. I’m looking for acupuncture in my area too. I live in a small area so it can be challenging for things like that unfortunately.


#2

mute – I literally just watched a lecture from The Migraine World Summit about migraine and fibro. I’m registered for the summit so I’m not 100% if the below link will work for just anyone, but it’s worth trying.

https://www.migraineworldsummit.com/5930289-2/

azurelle


#3

Hi. Sounds like it might be fibro. I’ve had it 30years and chronic fatigue syndrome. Morphine and muscle relaxants and lyrica help the severe pain. Cbd oil has helped with fatigue maybe 20percent.
Lexapro for depression and it helps me sleep. Acupuncture didn’t help. I’d be glad to answer any questions. Good luck😊


#4

Hi Mute - it does sound rather like many of the pieces that hang out under the Fibromyalgia umbrella. But. As you likely know, a fibromyalgia diagnosis is one of elimination, and fortunately your rheumatologist is the best place to make that call.

If you can do yoga as well as some light aerobic exercise, that would be great. Something that is difficult (at first) but gets high marks is elimination of gluten from your diet. I wanted very much to believe gluten wasn’t the issue, but I’ve just completed 7 weeks without it, and feel much better. I mean MUCH. It took about 4 weeks until I began to feel better, as predicted, but it’s a real thing, I’ve determined. Looking at removal of dairy possibly as well.
Very best of luck to you!


#5

I have had fibro for years too. I have eliminated chemicals from my house. All cleaners, scented candles, air fresheners, laundry products, shampoo, soaps, hair color, lotions, deodorant etc… It has helped ALOT! I use pinterest to find alternatives and ewg.org to find the ingredients that are safe in personal care products and cleaners. I also use essential oils to relieve my discomforts (congestion, air freshening…) I am happy to help you with this if it is something you may like to try? (I do not sell them! I can just tell you my favorites!) It sounds way harder than it is:)
Please know you are not alone, there are many, many of us who can understand how you feel.


#6

I found this fascinating! This speaker is also from near me, which is very interesting. I’ve also looked up her articles, so thank you for this.


#7

I have gone through quite a few dietary restrictions for a few reasons - I had gastric bypass about 3 years ago. I’m currently almost entirely gluten free, I don’t eat any rice, pasta, or potatoes ever. I’m mostly dairy free. But what I want to work on is sugar after seeing some things that seem like that might be a good idea. I currently eat sugar alternatives but that seems like it might not be a good idea?

I do a little yoga, but not much. I’m looking at yoga classes or tai chi. Maybe water aerobics? Just trying to find anything that could help. Feeling super desperate with things the last few weeks.


#8

I try to not eat straight refined sugar, or the artificial ones either, as “they” say Splenda and Equal, etc are quite bad for fibromyalgia and other conditions. I try to eat only added sweeteners that have no glycemic impact, like erythrose (“Swerve” is one brand name) which comes in granulated, powdered, and brown sugar forms, for baking and everything. (There must be sorcery involved, because it tastes wonderful.) Stevia is out there too, but I don’t care for the taste as much.
So, when I’m trying to take the D-Ribose as I mentioned elsewhere, ideally I might make lemon or limeade, sweeten it mostly with Swerve, and also add the d-ribose. No added sugar which has a glycemic impact.

Any of those activities are likely to help, from what I’m told.