Does this sound like Fibro?

[Dandelion2025]

Hello all,

I have posted to Reddit to try and find answers and gone to my GP more recently to investigate these symptoms.

I have been type 1 diabetic for 11 years so I'm no stranger to be generally ill.

Within the last 8 months that I can remember, if not before that, I have been getting more and more pains, throughout my body, continuously for hours. In the background it is like a dull throbbing or aching, in the joints, in the muscles, everywhere.
Then I get these sharp, fire poker like pains throughout too, they come and go suddenly.
My brother likes to annoy me by poking me but I've found this to be super painful more recently and he swears he isn't doing it any harder than he ever has before. It used to be uncomfortable but now it's more like, it hurts and I can still feel where he poked me, and the pain from it for up to 2 minutes after the fact.

I have started to have headaches within the last 3 months, which I have never really had before, or definitely not this bad.
I am so so so fatigued. I get up and brush my teeth or shower and I feel like I'm done for the day, the heaviness in my eyes is almost always there, some days are less than others.
I'm having issues with my memory, and find myself tripping up over my words often because of this.
I can't walk casually around let's say a supermarket for more than 10 minutes without such pain I have to hold onto the trolly to stable myself, and shuffle to the till and back to my car.
I'm waking up throughout the night due to the pain which obviously isn't helping with the fatigue.
I find ibuprofen and CBD oil tends to take the edge off the slightest bit but not enough to relax.

More recently I've had to buy a walking stick to lean on to help going from A to B if I'm not in the house.

I'm 21 years old so this isn't great.

I have had a vitamin D deficiency for a long time now, probably over 5 years, they've just out me on another high dose of Vitamin D for 2 weeks then once a month for however long they decide.
As well as slightly low Folate, only recommended to use dietary changes to fix this as its only a little low.

I'm just looking for some answers, my GP had me under a duel investigation, one for Crohns/colitis, and one for fibromyalgia.

They also tested me for rheumatoid atheritis but thar had come back negative too, which the GP stated she didn't think it would be that due to the pain outside of the joints.

I just have such bad imposter syndrome like I try to convince myself I'm not actually feeling this, or it's just my deficiencies, but I'm not so sure.

It is so hard because of course the body only has so many ways of presenting symptoms so of course it could be anything.

Any advice would be appreciated.
Does this sound like fibro? Could it just be the Vitamin D deficiency?

 

[sunkacola]

Hello @Dandelion2025 and welcome to the forum.

First, I want to say how sorry I am that you are going through all of this, and at such a young age. This stinks for you and people here understand your pain and fatigue and how debilitating this is.

I am especially sorry that your brother is acting towards you as he is. When something that is "intended" to be just a tease is actually painful, that makes it abuse, and you are within your rights to demand that he absolutely stop doing that completely. Whatever you need to do to make him stop, if it is screaming bloody murder every time he does it, or having a long talk with him or with your parents, or whatever it is, I think you should feel free to do that. there's no excuse for someone causing you more trouble or pain than you already have.

What you describe does sound like fibromyalgia, but that doesn't mean it actually IS fibromyalgia, because unfortunately there are many things which present similar symptoms. There is also the possibility that you have fibro AND something else. And of course no one here is a medical professional and we can't tell you what is going on with you, but we can be here for you and support you and let you know that you are not alone. There are others who also are as young as you are and are having such problems, too.

The thing to do for now is let your doctor(s) do all their investigating and testing for all of the things that might be causing these symptoms. Fibromyalgia is usually not diagnosed until the other things for which there are definitive tests are ruled out, so that's usually a first step.

Many understand the "imposter syndrome" thing as well. But I want to encourage you to trust yourself. You are feeling what you are feeling, and it is real. I honestly do not think that more than an extremely, vanishingly tiny percentage of the population of human beings would actually choose to pretend to feel as bad as we with fibromyalgia feel. What we are going through is real and debilitating.

Whether or not you get a diagnosis, you are welcome to come here and ask questions and get people's opinions, experiences, suggestions and support. There are many things you can do for yourself that may help ease some of the symptoms that you have, and that is what this forum is for. We are here to help you and each other, and I hope that you will find it helpful to be here.
Wishing you all the best.

 

[Dandelion2025]

I really appreciate your insight and the way you have worded your reply, it's made me feel at ease about posting here, as I have had backlash in other forums where they've told me that unless I am diagnosed I shouldn't be there.

 

[sunkacola]

I really appreciate your insight and the way you have worded your reply, it's made me feel at ease about posting here, as I have had backlash in other forums where they've told me that unless I am diagnosed I shouldn't be there.

Well, that is really too bad! And this forum is not like that. I think it's a shame that any forum is making people feel unwelcome, when we already have so much to deal with as it is. I am glad you found your way here and hope we can be helpful.

 

[bbbarnard]

To: @Dandelion2025
Hi,

I’m so very sorry you’re ill.

I only have a few minutes right now. But, I want to connect with you.

I believe everything you describe. None of it sounds like you are creating this in your head. Not one little bit of it !

No one wants to sit around and make up these symptoms. Listen to your body.

I don’t know if you have Fibromyalgia or not. More tests may be needed. More time may be needed.
But, if you have Fibro, life can still be lived. It will take some effort from you and those who love you.

My Fibro began when I was in my 20’s. I share the following, not to brag, but to help you know what can be accomplished: I was already married; I graduated from college. I was/am active in my church. We have 3 children (including twins). My career: a high school English and math teacher. Active parent, showing up! Active grandparent, never missed “grandparent’s day,” or concerts; even went on field trips. Have lifelong friends. Have made new friends along the way. Lived in three different states because of my husband’s job.

(Note: ask your brother to kindly stop poking you. My family and friends have learned to hug me gently, never pat or poke. I can’t publish the photo, but I have a photo of my outer thigh with a line of bruises on it because an elderly lady sat by me and poked my leg every time she or someone else spoke. If an elderly lady’s pokes can bruise, anyone can cause you pain by poking. I did find a new place to sit as soon as possible that day.)

I’m sending air hugs and a smile. Life will become manageable. Sleep/rest are important. No guilty feelings for going to lie down and rest, okay?

Try to find something to occupy your mind. Please don’t dwell on all the negative things happening right now. Whatever you can do quietly, do it. If you need to watch a movie that’s takes no brain power, then enjoy the escape.

Please keep in touch. I care about you. I have granddaughters about your age, and I would want someone to tell them it’s okay. You will come through this. Life isn’t ending.

Most sincerely, do take care of you.
BHB
@bbbarnard

 

[Dandelion2025]

Thank you for your kind words. I appreciate them so much, especially when my parents tend to think everything is the easiest explanation re: low vitamin D causing all the pain. And it may well be, but because of that, it means they won't even entertain any other idea unless it's on paper by a doctor.
But I'm pushing through and no matter what, I'll make sure I get a diagnosis of some kind

 

[bbbarnard]

@Dandelion2025
Hi,
I’ve had Vitamin D deficiency for years, so I’ve been taking supplements.
Here’s what my new doctor told me about a year ago. In order for Vit. D to work, I need to take it with Vitamin K2. The two vitamins can actually be purchased together.
I’m doing that. It does help.
Hugs

BHB
@bbbarnard

 

[sunkacola]

Thank you for your kind words. I appreciate them so much, especially when my parents tend to think everything is the easiest explanation re: low vitamin D causing all the pain. And it may well be, but because of that, it means they won't even entertain any other idea unless it's on paper by a doctor.
But I'm pushing through and no matter what, I'll make sure I get a diagnosis of some kind

One thing to keep in mind is that taking supplements without knowing for sure that you actually have a deficiency can cause a deficiency because it can put your system out of balance. So, unless you are tested and find that you actually need the extra vitamin, it is wise not to mess with taking supplements. On the other hand, there's not going to be any harm in making sure that you consume the foods that contain that vitamin or mineral, as part of your healthy diet.

 

[Dandelion2025]

Hello @sunkacola ,
Yes I have had low vitamin D for 5 years, I recently (Monday) had another blood test for Rheumatoid atheritis to check if the pain was that, which came back negative, but at the same time they tested my vitamin levels, I am currently sat at 17nm/L when it should be from 50nm/L-250nm/L and have been put on Strivit-D3 20,000unit capsules (Strides Pharma UK Ltd) which I'll pick up in the next few days, to be used, 1 a day for 2 weeks then 1 a month until told otherwise.
As for the folic acid, being slightly low, I've just been advised to eat more whole grains, white meats and vegetables like cabbage. Which I eat a lot of whole grains and white meat.

 

[Borzov1982]

Have you been examined by a neurologist for diabetic neuropathy?

 

[Dandelion2025]

Have you been examined by a neurologist for diabetic neuropathy?

Hello,
Yes I get examined every 6 months for neuropathy and retinopathy, and I have no signs of either. I have in my doctors words, amazing control over my diabetes too.

 

[sunkacola]

Hello,
Yes I get examined every 6 months for neuropathy and retinopathy, and I have no signs of either. I have in my doctors words, amazing control over my diabetes too.

Good for you to have good control over the diabetes.
If you don't mind my asking....(and if you do mind, just ignore this question!)....are you controlling it with diet? And if so, would you mind mentioning some of the things you are eating/not eating to do so? I ask because every year when I have my annual exam the doctor tells me I am verging on diabetic, and if it ever becomes over the line I want to try to control it without insulin if possible.

 

[Dandelion2025]

Good for you to have good control over the diabetes.
If you don't mind my asking....(and if you do mind, just ignore this question!)....are you controlling it with diet? And if so, would you mind mentioning some of the things you are eating/not eating to do so? I ask because every year when I have my annual exam the doctor tells me I am verging on diabetic, and if it ever becomes over the line I want to try to control it without insulin if possible.

Hi, no its a totally valid question.
I am a type 1 diabetic so I have to take insulin as my pancreas doesn't make insulin at all.
Rather than type 2 which is more on the insulin resistance side, meaning your pancreas makes insulin but it isn't as affective as it could be.
I definitely find though that some foods affect my blood sugars like crazy and some doesn't.
I find carb foods are complex, there are simple and complex carbohydrates, the complex carbs take longer to release into the blood stream and therefore irs easier to take insulin in advance and not see much of an affect on the blood sugar levels, simple carbs tend to go hand in hand with higher sugar content and cause spiking in blood sugar (atleast for me)
I stick to whole grains, sourdough breads, meats without any sort of sweet (so nothing like honey roasted hams), fruits with less sugar or which take longer to digest like bananas.
I stay away from sweets unless using for hypos and If I fancy something sweet I go for dark chocolate and the more expensive kind like Hotel Chocolat as their cocao content is higher than the sugar content.
Lots of water, I drink a ton of water and tea without sugar in a day, and try to stay away from pops and stuff.

For me, low carb, low fat diet is best, whilst I'm not the skinniest person due to outside factors such as thyroid issues, it keeps my blood sugar under control.

Keto diets (low carb, high fat) aren't great for diabetics as it is designed to produce high ketone levels which contribute to a loss of weight so stay away from them.

Realistically it's finding what works for you, and it's difficult unless you are constantly checking your blood sugars.
I'd suggest looking into getting a CGM (continuous glucose monitor) to see how different foods affect you, you may be eligible for a free trail for some brands, the big two are Abbotts Libre 2s/3s sensors and Dexcoms G6/G7/One series, it's worth looking into for sure.

I wish you luck, it's not easy to live with either type of diabetes and we can only do our best

 

[sunkacola]

Thank you @Dandelion2025 ! I have not yet actually developed diabetes, but if I ever do I am going to try to manage it entirely with diet if possible.

 

[marymi]

Leahhannah. Hi there. This group is only hear to help and we can always help with what we have tried and also our experiences. Please do feel welcome. I am a long term person and to me it's try as many relaxation ideas, ice packs and heat packs. See which medications suits you. See a Rheumatologist or a doctor who deals with FM. I am from Australia so you may need to read a few posts with other ideas. Good luck leah.