I'm still trying to figure it out and i need some help

[liaa]

Hi guys,
I'm really new to this but I'd like to read your opinions about my symptoms:
Two years i go i got a weird pain to my left ponter and my joint was stiff and sometimes painful. (I also have been seen by a doctor because both of my knees had some fluid that had to be removed) anyways i did blood tests and everything was clear. Then the pain started affecting the rest of my joints to my fingers and hands in general. I went to the doctor again and did more blood tests and i had some antibodies positive for lupus. I ended up doing the tests again and it came back negative this time. That happened for like some months and then the doctor i have been seeing gave me some medicine for arthritis and lupus all at once. (I didn't take it because something was off with this diagnosis and i changed doctors). Then it was a period in my life when i moved and i was trying to adjust to the changes. I started having more intense anxiety and later on a depressive episode. I started having pain to my elbows, shoulders and then my legs- hips, knees, feet- i was struggling with stress and i went through a period that i wasn't eating enough. I had no appetite at all. I started seeing a specialist but the pain made it worse. Now I'm in a better mental state and i try to maintain the stress but i still have pain and weird symptoms. I had about a six month period that i wasn't in any pain and i felt great. I was exercising and everything but then I started being in pain again. Since then it comes and goes. I have periods that it calms down and i can function through the day. Then when I'm in pain my brain can't really focus. I stay in bed a lot and it's a constant ache for like some hours or it comes and goes. When i get up and walk I'm stiff to the joints and muscles as well. I don't find myself being in severe pain that I can't even get up and I read that this can happen. Also my pain can feel like a heartbeat, i mean this weird throbbing sensation, other times it can be a stabing one or i could feel my skin burning in some areas or some weird sensation like electricity is passing through them. It gets worse at night a lot and i fall asleep really late which then affects my day. I get this tingles in feel and hands also sometimes or a light numbness that doesn't go away. And i have muscle spasms as well. Sometimes i have headaches and i feel very very tired, people even notice. I must add that i also discovered i have iron deficiency because my ferritin is really low, I don't know if this affects it. The weather also affects me as well. I have visited my doctor several times but their response is that it's nothing. My blood tests are clean and i just feel very confused about all this. I don't know how to approach this situation.
I hope I didn't waist your time talking about this because usually when i do i feel guilty and like i am lying since the doctors can't find an actual cause.

 

[sunkacola]

Hi liaa, and welcome to the forum. You are definitely not wasting anyone's time here.
The thing that strikes me the most in your post is that you say

I don't find myself being in severe pain that I can't even get up

But at the same time you say that you stay in bed a lot.
If you stay in bed a lot when you actually could get up and move around then I can guarantee you are making whatever is going on with you much worse. You have to keep your body moving. The human body is not designed to be sedentary and lying down in bed (or sitting down all the time for that matter) is one of the worst things you can do to yourself. This is true for healthy people and 10 times more true for people with fibromyalgia or other such syndromes or disorders.

So the first thing I will say to you is get yourself moving. You are stiff when you get up because you are not using your joints and muscles and the only way to overcome this is to move them!

You don't have to go out and run or do aerobics or anything. But get yourself out of bed and stay out of bed all day. Every day. No matter how you feel. Don't sit in one place for hours. Get up, move around the house, go outside for a walk even if it is a five minute walk. Go out every morning and every evening. Look at the sky, see the moon, breathe in the air. Move your arms around. Lift your legs. Put on music you love and move to it.......any kind of movement you feel like. Just do it slowly and easily at first and build very slowly up to doing more. This is the number one most important thing for you to do and the very first thing you must do. I would bet money that if you do this every day you will start feeling a little better within a week!

Secondly, you want to get tested for everything that could be causing your pain, and there are a lot of things. If you test negative for everything it could be then you may very well have fibromyalgia. This syndrome is defined by having widespread bilateral pain for which no direct cause can be found. It does tend to come and go in some people, and in most people it has periods of greater and lesser severity.

There are a lot of other things you can do to help yourself besides moving your body regularly. Make sure, since you know you are low in iron, that you eat iron-rich foods, which will give you iron in a more absorbable form than iron pills will. Moving your body will also help circulation, which is very important with any iron deficiency.

Here is a whole post I wrote on other things you can do to help yourself have a good life in spite of this syndrome, if in fact you do have fibromyalgia. (and even if you didn't, they are good things to do)
Start with working on your diet, and cut out sugar (and alcohol if you drink any). This alongside making sure you keep your body moving will probably allow you to feel a lot better within a month. Takes a little work at first, but believe me it's worth it. And stick around here..........we are all here to help and support each other.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[liaa]

I really appreciate everything you wrote. I forgot to mention that i do workout and try to do everything i need in the day but I'll try to keep myself off bed when it's not time to sleep. Thank you for your time.

 

[JayCS]

Hi liaa, whether fibro or similar or no, I feel there's a lot you could try to improve your symptoms with.
Let's see if anything resonates for you...

Two years i go i got a weird pain to my left ponter and my joint was stiff and sometimes painful. (I also have been seen by a doctor because both of my knees had some fluid that had to be removed) anyways i did blood tests and everything was clear. Then the pain started affecting the rest of my joints to my fingers and hands in general.

I'm clueless what you might mean with a ponter, but joints stiff and hurting for me is always the question whether it really is in the joints or the muscle tendon insertion points around them. Pressing points around the joints whilst still and whilst moving shows the difference. If it's the tendons that can be treated with stretches for tendonitis in that joint (e.g. youtube), starting low, going slow.

I went to the doctor again and did more blood tests and i had some antibodies positive for lupus. I ended up doing the tests again and it came back negative this time. That happened for like some months and then the doctor i have been seeing gave me some medicine for arthritis and lupus all at once. (I didn't take it because something was off with this diagnosis and i changed doctors).

Maybe fairly well meant idea of the doc to offer it, even better you declined...

Then it was a period in my life when i moved and i was trying to adjust to the changes. I started having more intense anxiety and later on a depressive episode.

I always recommend - like I do myself - to look for counselling help if this comes up. Losing appetite and not managing to get up out of bed might be consequences or associated on the mental side.

I started having pain to my elbows, shoulders and then my legs- hips, knees, feet- i was struggling with stress and i went through a period that i wasn't eating enough. I had no appetite at all. I started seeing a specialist but the pain made it worse. Now I'm in a better mental state and i try to maintain the stress but i still have pain and weird symptoms. I had about a six month period that i wasn't in any pain and i felt great. I was exercising and everything but then I started being in pain again. Since then it comes and goes. I have periods that it calms down and i can function through the day. Then when I'm in pain my brain can't really focus. I stay in bed a lot and it's a constant ache for like some hours or it comes and goes. When i get up and walk I'm stiff to the joints and muscles as well. I don't find myself being in severe pain that I can't even get up and I read that this can happen. Also my pain can feel like a heartbeat, i mean this weird throbbing sensation, other times it can be a stabing one or i could feel my skin burning in some areas or some weird sensation like electricity is passing through them.
It gets worse at night a lot and i fall asleep really late which then affects my day. I get this tingles in feel and hands also sometimes or a light numbness that doesn't go away. And i have muscle spasms as well. Sometimes i have headaches and i feel very very tired, people even notice.

There are important clues in here for what your triggers are, so you can prevent and tackle them:
The specialist made the pain worse? What kind of specialist, and how?
How do you explain the 6 months without pain, the flare up, the coming and going?
One possibility is that you keep overdoing things, like the exercising.
It's normal for pain to cause some "brain fog", good strong habits and a toolkit for workarounds help.

I fully agree with @sunkacola, esp. that staying in bed is understandable for people new to chronic illness, but actually very detrimental - for pain & stiffness, for our mental state, and for sleep. We learn if we have the flu to stay in bed to let our body recover. Chronic illness is different. We need to keep in regular slow movement, intermittent as necessary, say pain experts. Our mind needs to know that our bed is for sleep, not for rest, say sleep experts (NSDR non sleep deep rest is the only exception as a workaround for sleep, but even then if we're "wide awake" for longer than 10 minutes, we need to get up till we feel tired enough, reduce sleep time, get up early, get early sky-/sunlight). Staying in bed, and feeling "bed-ridden", rides and drags us down. An impulse we need to resist as much as possible.
Of course we may need rest, but with day clothes on, gently moving & stretching while resting, etc. This sensation of very gentle light movement or stretching reduces the pain sensation in the brain (say pain experts).

I get all of the pain types you describe - the constant or changing Ache I get from overdoing it (post exertional malaise) or just from lying or resting too long in one position (which may be 5 or 10 minutes). Where this intense throbbing thudding heartbeat pain thru my whole body comes from I'm keen to know (my wife is too...), stabbing, skin burning, electricity too, tingles, numbness, spasms. If these happen more than a few minutes a day, I'd get them checked, some might be neurological, but generally, if we move more these are usually better. And if they do come, panicking will make things worse, just saying "hello, oh, it's you again" is best. For spasms there are many things to do, for me it used to be important to drink more, for some it's magnesium, for me now it's more too little or too much stretching / exercises for that body part.

I must add that i also discovered i have iron deficiency because my ferritin is really low, I don't know if this affects it. The weather also affects me as well. I have visited my doctor several times but their response is that it's nothing. My blood tests are clean and i just feel very confused about all this. I don't know how to approach this situation.
I hope I didn't waist your time talking about this because usually when i do i feel guilty and like i am lying since the doctors can't find an actual cause.

Iron is one of the typical things we can get checked. Your D3 and B12 seem OK, and increasing them doesn't improve my pain at all.
For the weather it's important to find out how long we can tolerate what and how best. I have to keep periods of sun and wind down, but I've become more heat and cold tolerant by quickly changing my clothing layers and using cold showers for both.

So generally how to approach: We expect too much of doctors/research and ourselves to find causes or see things visible. It's an expectation of our modern way of thinking that we should be able to control everything. When actually there's so much humans can't control and just have to "radically accept". That's the most useful attitude of coping with chronic disease. Accepting what we can't change, but tackling anything we can, tracking our symptoms one by one, hunting their triggers and testing various ways of preventing or reducing them, which will first cause backlashes till we find the right ways - but that's necessary to the path and will get better and better. Hope you find your way, maybe with our mutual help.

 

[sunkacola]

I stay in bed a lot and it's a constant ache for like some hours or it comes and goes. When i get up and walk I'm stiff to the joints and muscles as well.

This is what I was referring to when I suggested you get out and move more.
But now you are saying:

i do workout and try to do everything i need in the day but I'll try to keep myself off bed when it's not time to sleep.

and those two things seem to contradict each other, so now I am confused.

 

[sunkacola]

I'm clueless what you might mean with a ponter,

I think they meant "pointer", or pointer finger, meaning first finger.

So generally how to approach: We expect too much of doctors/research and ourselves to find causes or see things visible. It's an expectation of our modern way of thinking that we should be able to control everything. When actually there's so much humans can't control and just have to "radically accept". That's the most useful attitude of coping with chronic disease. Accepting what we can't change, but tackling anything we can,

100% agree with this.
Letting go of the expectation of being able to control anything at all is one of the most freeing things a person can do.

 

[Auriel]

Hi Liaa, welcome to the forum ️ , I was just wondering seen as they've tested you for lupus have they tested you for autoimmune thyroid? Fibro pain is usually a wierd burning pins and needles neuropathic electric type of feeling so it could be fibro, I've got cfs with mine so I can get wiped out out of the blue sometimes (and it does affect the mind and memory too), I got diagnosed (like many others) through a rhumatologist (but some say you don't need a rhumatologist to diagnose it) I hope they find out the cause so plans can be made to try and make things better ️️

 

[JayCS]

I think they meant "pointer", or pointer finger, meaning first finger.

Ah, thanks! So "pointer" can stand alone, didn't realize.
"First finger" also gets me confused, in Germany and I think in the UK too, that'd be the 2nd finger...
And "pinky/pinkie finger" too, love it - can pinky stand alone too? That comes from a Dutch word for it, pink, but there's nothing like it in German.

 

[Auriel]

I was wondering that, too! (I thought it might've been a type-o)

 

[sunkacola]

Fibro pain is usually a wierd burning pins and needles neuropathic electric type of feeling

Just want to mention that since everyone experiences fibro pain differently, it's probably best not to assume that any kind of pain is "usually" when it comes to fibromyalgia. Of course, it's helpful to let another person know that you have fibro, and that your own pain is similar to theirs if it is. But that doesn't mean that it is necessarily the "usual" or most common kind of pain.

 

[JayCS]

Fibro pain is usually a wierd burning pins and needles neuropathic electric type of feeling so it could be fibro, I've got cfs with mine so I can get wiped out out of the blue sometimes (and it does affect the mind and memory too),

Just want to mention that since everyone experiences fibro pain differently, it's probably best not to assume that any kind of pain is "usually" when it comes to fibromyalgia. Of course, it's helpful to let another person know that you have fibro, and that your own pain is similar to theirs if it is. But that doesn't mean that it is necessarily the "usual" or most common kind of pain.

The details here are a bit eye opening to me (again).
Yeah, sure, people generally experience everything differently, pain types generally are all different, some of us with fibro may have only a few pain types, others 10 or more, and these will increase from co-morbidities, and still "my" 10 will differ from "yours", in type, severity, frequency, influence, depend on our resilience to the various types....
Good, @Auriel, you said it so matter-of-factly, because I've often enough assumed the same about my Ache, that everyone has it, cos so many people I've heard talking about fibro feeling like the flu, and cos I feel I'm gabbling on about it so often, that surely someone would protest. In fact I think it was only @sunkacola that has ever asked about its severity, another eye opener. So for some an ache might be dull and at most "a 2", whilst for me with exertion it can shoot up to 5-6 and even above, even if it still sort of dull and "not sharp", and even without any exertion can be 2-4.
An added complication here is that there is no translation for "Ache" in German, so I'm then even more lost for words. But the closest approximation is something like a mixture of "smashed" / "broken to pieces", which means something very different to me, cos it doesn't have the aspect of dullness, but it still fits quite well to how I feel. Praps more when I've actually overdone it, so what I did smashed me, like post exertional malaise. But the Ache without exertion is equally smashed without anything smashing me, that's the curious thing about this condition. The problem with "smashed" in English then again is that anyone can say that after a hard day's work or a workout, which can be a nice, satisfied feeling. I always loved to get sore muscles, now I hardly ever get a chance.
And on the other hand myself I only occasionally have pins and needles neuropathic electric pains, unless I jangle a nerve, but it'll always go away pretty quick. I do have burning outside and inside (e.g. mouth), but these will be the mast cells (immune system) outside and in, or hyperacidity of my stomach. More often than decidedly neuropathic pains, I have ones that I can hardly express, like the throbbing heartbeat one which thuds in my body with jolts like an elephant kicking me (OK, that'll do for expressing it I spose, but there's others I can't).
And coming back to @liaa's symptoms which I thought I also have I now realize others can say they have that too, but then that description doesn't sound like what I mean/feel at all. So we may easily read our pain experience into what someone else says/writes... Ain't easy...

 

[Auriel]

Just going by what I felt with mine and what some of the others gave said (there must be some similarities for there to be a a diagnosis of what it could be?) But im not making discussions out of it I'm too tired.

 

[BlueBells]

Hi @liaa

I'm new here, and browsing a bit. Wondering how you are going with all of this?

I did the fibro test on this site, and I was quite surprised just how many boxes I actually ticked ! Maybe have a shot at that if you haven't yet, and it may help you figure it out a bit more. Maybe.

I'm still trying to figure it out too, it's an intriguing and frustrating little gremlin, isn't it?

 

[Auriel]

Fibro's a gremlin for sure! (It's been fed after midnight and covered in water)

 

[BlueBells]

Fibro's a gremlin for sure! (It's been fed after midnight and covered in water)

Ahh yes !!! We must care for the little critter

We are Dragonised by Gremlins