My list. (Would greatly appreciate any feedback)

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Momzilla

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Hi I'm Andrea. I'm new.
I had Puppp rash first pregnancy when I was 20
Had emergency c-sevtion
29 -i had a spontaneous pneumothorax
My left lung almost 100% collapsed. Close to cardiac arrest. Ended up taking off top part of lung due to blebs. Right lung full of blebs.
Hands and feet always freezing
Fatigue
Weird rashes
34 Pregnant starting getting puppp rash
Another c-section
Symptoms have been all time worse since pregnancy
Arms burned so bad sometimes i could barely change diapers.
Horrible lower back and spine pain worse in morning
Often severe rib and sternum pain.
Sometimes hip and pelvic pain
Knee pain last few years
Weird sore lumps back of legs,shins, some hurt really bad. They come and go.
Lots of new rashes/eczema
Hands will get to the point they bleed
New weird reactions and swelling to bites/stings
New allergic reaction to CT dye. Face and eyes swelled and covered in hives.
My skin burns on face and arms.
Weakness in hands always
Joint pain in hands and knuckles
RLS
Bad days its almost like my arms and legs are numb. Not tingling though. Like zero strength.
I think I have EDS too
Can get bad pain in collar bone.
Some times my feet hurt when I get up.
My scalp can get really sore
I'm drastically losing my hair in a 4 year period.
If I scratch my arm it feels like someone is driving a screw driver into it and it takes minutes for the pain to stop. This is also in my thy and hips.
I bruise way to easy. I bumped my hand on corner of bathroom sink and looked down at it and could already see the lump and bruise. Now I have a penny size bruise on my hand. The rheumatologist told me I was tired because I had a toddler.
I have an incredible high pain tolerance. I had to get an emergency chest tube before they could wait for the morphine to kick in. I FELT it ALL. so why does this stuff all hurt so bad.
I have a lot of rash pictures if anyone ever shares those? Nothing too nasty or inappropriate.
 

JayCS

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Hi Andrea, welcome!
Ha! - Symptom pinpointing & analyzing, trigger hunting: Love it, relish it, and my #1. And helping others there helps me.
My suggestions? (I'll try it short, so 'impolite', please ask for more details :).)

Hands and feet always freezing: Raynaud's syndrome(?) Training with alternately hot & cold water or pads or baths in canola seeds or spelt etc.. Always keep them warm: gloves however silly it may feel (advocates us by makes the invisible visible). More socks, heat pads, spelt cushion, I often prefer hot water bottle. Since fibro I wear 3 pairs of organic cotton socks in hotter summer in sneakers, plus one pair of woolen socks over them rest of the year. (Socks you can microwave, battery heated socks for hunters..., electric blanket) Supps: Herbs/anti-infl. ('warming') spices (too GI-tough for me), L-Arginine? (for bp too) (study 2019: only if secondary.) Grape seel oil, Inositol, Ginkgo, Ginseng, Mg oil, vit. B, C, D, E, Se, Zn, acupuncture? (Thank you for making me search for that!). Med: vasodilator & circulation meds.
Fatigue: FM if nothing else. Pacing. Exercising short but regularly. Supps: NAC, ALC and esp. NADH, Ribose
Weird rashes/Lots of new rashes/eczema: Contact triggers like soap, detergents, water? (I need to minimize contact.)
pregnancy & c-section: Obviously major triggers
Arms burned so bad sometimes i could barely change diapers: Skin or muscles? Where exactly? When?
Horrible lower back and spine pain worse in morning: Mattress/topper/pillos? Lying on back? (Me: 4' on my back; I need to lie twisted).
Often severe rib and sternum pain: osteopathy, chiropractic, acupressure, then gentle physio exercises regularly, praps from the back.
Sometimes hip and pelvic pain: When, what positions?
Knee pain last few years: When? Orthopedic scans done? Insoles? Exercising/twisting? (Me: Need to twist my legs (and arms) while walking)
Weird sore lumps back of legs,shins, some hurt really bad. They come and go: Dermatologist, expert physio.
Hands will get to the point they bleed: Dry skin, praps in combination with Raynaud's? Keep warm, find good cream. (Me.)
New weird reactions and swelling to bites/stings: immune system? Naturopath? Immune-supps.
New allergic reaction to CT dye. Face and eyes swelled and covered in hives: Same. Of course avoid if possible.
My skin burns on face and arms: Dry skin? Contact triggers like water? (Me: prevent.)
Weakness in hands always: Hand exercising (e.g. youtube tutorials)
Joint pain in hands and knuckles: Rheumatologist? Arnica cream.
RLS: Sure? Meds like Levodopa + benserazide, or better just dopamine-supps like glutamine, theanine etc.
Bad days its almost like my arms and legs are numb. Not tingling though. Like zero strength: Different from fatigue?
I think I have EDS too: Checked? (Which type?) Pain management, CBT. Extremely careful exercising, stretching gentle expert physio.
Can get bad pain in collar bone: gentle physio: osteopathy, chiropractic, acupressure. (Me.)
Some times my feet hurt when I get up. From chairs or from bed? What part of the feet? Inside or out?
My scalp can get really sore: Contact triggers once again? More natural shampoo, wash less (or more)
I'm drastically losing my hair in a 4 year period: No ideas on that at the mo.
If I scratch my arm it feels like someone is driving a screw driver into it and it takes minutes for the pain to stop. This is also in my thy and hip: allodynia? Everywhere there, or just certain spots? Ask expert physio?
I bruise way to easy. I bumped my hand on corner of bathroom sink and looked down at it and could already see the lump and bruise. Now I have a penny size bruise on my hand: Careful! ;-) Arnica. Get checked.
The rheumatologist told me I was tired because I had a toddler: Get a new one if possible, unless he was tired because he has a toddler...
I have an incredible high pain tolerance. I had to get an emergency chest tube before they could wait for the morphine to kick in. I FELT it ALL. so why does this stuff all hurt so bad: Haven't quite understood, but several of us incl me have a high pain threshold and a high pain tolerance, but it still all hurts so bad, that's FM. Usual for FM is said to be a low pain threshold and a high tolerance.
I have a lot of rash pictures if anyone ever shares those? Nothing too nasty or inappropriate: Dermatologist, try to find your contact triggers... BTW I personally wdnt take any meds for any skin stuff, with 'dermatologist' I just mean to get a diagnosis and ideas (incl. supp ideas).
(And living in a healthy way and with a healthy diet, i.e. all natural foods, no additives, little sugar etc., best a Mediterranean diet - sunkacola's advice post pinned at the top of the forum is great help for all of that too, if you haven't taken that in yet...
OK, I hope I haven't been too impolite ;-)
 
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Jemima

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Hi I'm Andrea. I'm new.
I had Puppp rash first pregnancy when I was 20
Had emergency c-sevtion
29 -i had a spontaneous pneumothorax
My left lung almost 100% collapsed. Close to cardiac arrest. Ended up taking off top part of lung due to blebs. Right lung full of blebs.
Hands and feet always freezing
Fatigue
Weird rashes
34 Pregnant starting getting puppp rash
Another c-section
Symptoms have been all time worse since pregnancy
Arms burned so bad sometimes i could barely change diapers.
Horrible lower back and spine pain worse in morning
Often severe rib and sternum pain.
Sometimes hip and pelvic pain
Knee pain last few years
Weird sore lumps back of legs,shins, some hurt really bad. They come and go.
Lots of new rashes/eczema
Hands will get to the point they bleed
New weird reactions and swelling to bites/stings
New allergic reaction to CT dye. Face and eyes swelled and covered in hives.
My skin burns on face and arms.
Weakness in hands always
Joint pain in hands and knuckles
RLS
Bad days its almost like my arms and legs are numb. Not tingling though. Like zero strength.
I think I have EDS too
Can get bad pain in collar bone.
Some times my feet hurt when I get up.
My scalp can get really sore
I'm drastically losing my hair in a 4 year period.
If I scratch my arm it feels like someone is driving a screw driver into it and it takes minutes for the pain to stop. This is also in my thy and hips.
I bruise way to easy. I bumped my hand on corner of bathroom sink and looked down at it and could already see the lump and bruise. Now I have a penny size bruise on my hand. The rheumatologist told me I was tired because I had a toddler.
I have an incredible high pain tolerance. I had to get an emergency chest tube before they could wait for the morphine to kick in. I FELT it ALL. so why does this stuff all hurt so bad.
I have a lot of rash pictures if anyone ever shares those? Nothing too nasty or inappropriate.
Hi Andrea,

I'm so sorry you're going through all of this - what a war you've been through, over so many years. You must be so frustrated to still be looking for answers. I'll second what JayCS said above - if your rheumatologist said that these symptoms are just tiredness, then you need to give them the boot and find a new doctor! Pregnancy can trigger all sorts of health issues, but what you're experiencing - over such a long period of time and with so many complications - is not "normal". You need to be seen by someone who is genuinely motivated to help!

I'm not a doctor, but I'll weigh in on what I've read, and what I know of fibromyalgia from my own experiences and others. Keep in mind that these suggestions are pretty random - I don't know all of the things that could cause what you're experiencing, but sometimes having new ideas can help us kick our doctors into action!

All of the pains that you describe do indeed sound like they could be fibromyalgia - although without going through the diagnosis process, it's hard to know for sure. Fibromyalgia is a diagnosis of exclusion; have you been taken through in-depth testing to rule out all other possible causes? Often, fibromyalgia manifests alongside other conditions (EDS is actually a relatively common one), making the whole thing even more complicated, but don't give up - keep pushing, and you'll eventually tease everything apart.

The swellings you describe and the pain in your collar bone sound to me as if your lymph nodes could be inflamed, suggesting that your immune system is battling hard. Viral infections such as EBV have been tied to fibro, so you might find something useful if you read into that. Chemical sensitivity is also a common co-condition with fibro, perhaps explaining your new allergy, and suggesting it could be worth exploring triggers in your life such as certain foods or cleaning products.

Some do experience random rashes with fibromyalgia, but once again it's hard to say if fibro is the cause, or something else in play. Have your doctors ruled out shingles? My mum had that after she had my sister, and was sick for a very long time before a doctor finally thought to check (caused by another virus - varicella-zoster, which also causes chicken pox) and confirmed she had it. When you say your scalp gets sore, is there also a rash under your hair? This also makes me think of shingles, which can cause hair loss in this way, but of course might not apply to you.

Bruising easily can indicate deficiencies such as low vitamin c or iron, or it can point to an underlying health condition. Another unwelcome piece of your puzzle! Fundamentally, doing your own research is probably going to be important as you progress, but from the sounds of it you also really need the assistance of some kind of medical professional who can work through investigating the possibilities with you. What I feel very certain of is that no doctor should be leaving you to struggle on in this way. I'm so sorry you haven't had more support up until now.

I've gotten tattoos since I was a teen. For the most part they've relaxed me. I normally take a book to read or chat with my tattoo artist. Ive been so busy with kids,dogs,life I haven't gotten any tattoo work since I've had fibromyalgia. I wonder if I could even do it now?
I have lost myself completely. Haven't ridden my motorcycle, haven't played paint ball. Im an artist and I still do art but my hands get all cramped and gnarly.
Thanks for listening/ reading. I bet you all get tired of listening to the new bees lol jk.
I am so grateful for everything in my life. My life is the way id want it. My kids, my dogs, my house,and my career. But whatever is wrong with me dictates so much. Its literally changed who I am. I often find myself thinking "if they only new me before"
I grabbed this from the other thread you posted in so I could reply in one place! I totally understand the feeling of having lost yourself. If it's any comfort, I have had tattoos since developing fibro. I imagine getting your allodynia more under control might be necessary, but I hope you get to do that again if it's important to you! It's wonderful that you are so gratitude-oriented for the positive things in your life right now, but I also hope that you'll be able to manage/treat your symptoms in the future and do more of the things that give you joy. Some things we have to let go of - for me, this was weight training, which was a real passion - but some we can gradually reintegrate as we go forwards.

Finally, I'll say that if you suspect fibromyalgia, it's always worth doing all the right things to manage the condition right away. They are all things that will benefit anyone, so there's no harm in trying. I answered another thread this morning talking about that, so maybe have a read. It also links to our moderator Sunkacola's pinned post about managing fibro, which is a fantastic place to start.

Please keep us posted about how you get on! Keep the faith - even incurable things like fibromyalgia can be transformed with gradual experimentation until you find the right approach. But, if I were you, I'd keep fighting to make sure you don't have something treatable that ball-dropping doctors have missed. I will keep everything crossed for you 🤞
 

JayCS

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I grabbed this from the other thread you posted
Tell me tell me tell me how, I wanna be able to grab too! 🧙‍♀️
(I'm too dumb... seen my edit of the FM/a-test in italics about multi-quoting?)
 

Momzilla

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Messages
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Thank you JayC and Jemima! My goal with the forum is that light bulb moment hoping even 1 small thing clicks. Sounds like I may have some different or unrelated symptoms and maybe this could even help someone else.
I've seen many doctors and haven't gotten any where. They do lots a blood work but never any imaging. Primary care physician said its fibromyalgia. He gave gabapenten but I didn't like how it made me feel and can't afford to be more dizzy groggy etc. Not interested in stuff that comes from large pharmaceutical companies. Im already married to my vyvance which I hate.
I was thought to have lupus which I dont. Been tested for epstein bar. Don't have. Few people suspected lymes which could make sense. Had multiple lymes negative. How ever my understanding is the western blot is the most accurate test but they will not do western blot unless the first test is positive or inconclusive. Rheumatoid runs in my family,my blood work for that negative. I don't eat red meat so I always get iron checked. Thats fine. The only thing my blood has shown thus far was low vitamin D.
I've done so much research its insane and I know you have to be your own advocate in the new world. Last year I saw a lady that wanted to rule out MS but insurance denied it. Oh and I def. Thought thyroid with my hair loss and my neck is like thicker than before but that was fine. And based on research I've done I made sure they did the specific blood word for that not just looking at the. I've read thyroid is highly missed because primary doc. Look at standard tsh and if that is in normal range they say you're good, but can actually still have a problem.
A friend recently told me zinc deficiency can cause hair loss and I don't believe anyone looked at that before.
After my doc said I had fibromyalgia I looked up doc in my area that would treat that and it showed the rheumatologist that said I was tired from having a toddler. Slim pickings here especially going through insurance. I'd love acupuncture just need to find time and someone. This is the most curious rash I started getting so ill share. I only get in top of leg. It definitely has to do with direct sun light. First time I was in Ocean. Every other time I was in sun but wearing pants. Only get it once in a blue moon. Im in the sun ALL the time. The sun is my favorite thing. Found a couple like this on Google images but people don't seem to know what it is. One person said theirs was lupus.
JayCs, the arms burning when changing diapers I meant muscle burn. But I get the skin burn too and its definitely worse/more of a fall winter thing. I try to make sure showers are not too hot. Try to lotion after.
 

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Jemima

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It sounds like you're doing incredibly well in terms of being your own advocate and researching. It's great that you've had all the blood work done - that eliminates a lot.

Your rash pictures look just like the heat rash my sister gets on her thighs in the summer - I'm pretty sure she's had it on and off her whole life, so it perhaps might be as simple as that? At least, for that particular rash manifestation... Skin burning in colder weather could also be to do with reynauds. I've read the same thing about thyroid issues being missed because so-called normal-ranges are far too wide.

If you're wondering about deficiencies and hair loss, could it be worth just grabbing a decent hair multi and seeing if it makes a difference? If you are so deficient in something like zinc, that's going to make you feel rubbish. Apparently, zinc deficiency can also cause skin lesions that look like eczema, if that means anything to you?

I'm totally with you on the prescription medications. I went a way down that path but had too many side effects and issues, so changed course towards holistic symptom management and supplements. That's carried me much further!

I wish you every luck in making a meaningful breakthrough soon!
 

Auriel

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@Momzilla, I have an autoimmune thyroid and sometimes wondered if this sore head is connected? I also have not ate meat nearly 13 years so that’s something else that popped into my head (Then tea tree oil for some reason???) I love motorbikes 💞💞💞 never had one but 2 ex’s did, your posts are actually really interesting, all juicy and meaty for some of the members to get stuck into, my vitamin tests have always come back normal apart from 1 time it showed slight anaemia but then normal again, and like you I’ve done all kinds to my hair from dying black to purple to rainbows, now I’ve decided to give it a break I’m finding more is coming out! which is sad (cos it’s the longest it’s ever been!) I’ll take jemima’s advice on hair vitamins see if it helps, I love tattoos (especially sleeves) anyway I’ve gone on long enough now, hope your liking the forum anyway 🖤💜🖤
 

Auriel

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Andrea they didn’t find my thyroid problem till they reversed the test, it might be worth asking for that, mine was showing up as normal for ages until I got fed up went to a private e.n.t because of my thyroid pain and inability to stay wake then I had a scan confirming it then reverse bloods showed autoimmune then my levels went under 🍄🧚🏻‍♂️🍃
 

Momzilla

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Wait what do you mean by reversed the test?Also what is thyroid pain like? My parents told me my neck looks swollen. When my fatigue is at its worst my throat feels tight and you can literally hear a difference in my voice. I also have a tiny lump in my neck on the left. It doesn't hurt and don't think its a gland because its always there. A doctor i saw said I should get a CT scan to be sure but this doctor was the one that had just treated me for hives that some how turned into a severe case of folliculites from my allergic reaction to CT dye. I cant make this stuff up. Lol
I had magenta hair all through my teen years and into mid 20s
Whatever is going on with my scalp fluctuate like everything else.
I also wanted to get tested for a gene mutation in the folicuin. Specific birtt-hogg done syndrome
My dad and I have a bunch of similarities and I came across this several years ago when I mixed up my Google search and looked up lung blebs and folliculites.
I've learned not to leave stuff out even if it seems unimportant. That's why I included about my puppp rash and c-sections in my list I posted. Ive read like 1% of people get puppp rash. Ive read like 1% of people are allergic to CT dye...
I have visions of what it'll be like one day when someone says ureaka! (Sp)
I new a lady that had an ongoing health problem where her eyes would close.ike they wouldn't stay open. It came out of know where. She spent years going to doctors and specialist. Eventually they told her it was in her head and she ended up with depression and in therapy. She was only in 40s and couldn't even drive any more. Short story long one days years later she was in the right place at the right time and ran into a doctor unexpectedly that new exactly what she had! I believe it was called bletherospasam.(sp)
It was never in her head. Its legit a muscle problem with the eye lids.
Any way. I do like the forum Auriel!
I'm tired of being alone with this. No one gets it. When you talk about fatigue people say yeah im tired to. Yes I have read about tea tree oil for scalp. I used to use tea tree oil on my piercings.
 

Christopher

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Recommend to get a full hair mineral test done if you want to check on complete levels of minerals. It not just for the minerals themselves it also looks at the ratio (how they combine together) plus looks at toxic heavy metals which no doubt most of us have. The rash you showed in the pictures also looks like a rash that people with Mast Cell Activation get. Could be worth looking into.

Overall i'd say stop trying to treat every symptom... this is a systemic issue and its more an issue of the terrain than any particular issue. Clean the terrain and the body can heal. Suggest to look into the work of Dr Robert Morse (naturopath) who works on regenerative detoxification.
 

Auriel

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It’s called a reverse T3 blood test they ask for them if they think someone might have autoimmune thyroid 💜💫💜
 

Jemima

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Tell me tell me tell me how, I wanna be able to grab too! 🧙‍♀️
(I'm too dumb... seen my edit of the FM/a-test in italics about multi-quoting?)
You can use the "+ Quote" function between threads! Just highlight what you want to take and select "+ Quote". Then, on the thread you want, click on the "Insert quotes" button at the bottom of the text box to insert what you've lifted.
 

Auriel

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Hi @Christopher, I can see you only joined a few hours ago, cool, I read about mineral hair testing before, I think I’d like it done I just don’t know what name to look under as a specialist ? I’ve got a feeling I might have go a bit out of the way to find one, I’ve not ate red meat(or any meat! for nearly 13 years yet blood tests always show normal?) my nutritionist thinks I might not be absorbing vitamins in my tummy properly, I also had gallbladder removal 5 years ago + everything went downhill since then? I’d be grateful for any advice + welcome again 🧞‍♂️🧞‍♀️🧞‍♂️
 
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