Welcome from Poland - Undiagnosed but have many symptoms

[agaz]

Hi everyone!

I am writing in the midst of this crazy time of Covid-19, war, and everything personal.

I did the fibromyalgia test after countless googles of my different symptoms that happen to me for many years now. It said it is very likely I have it.

What is bothering me the most:

• not exercising contributes to everything aching me while other people can not lift a finger their entire life and are super fine;
• I constantly lack energy, could sleep for ages;
• as far as I remember every part of my body was painful when pressuring, massaging, touching. The most extreme are my outer sides of the thighs, spine area, feet;
• I have many illnesses that are autoimmune (asthma, allergies, nodules on the thyroid gland, IBS and chronic gastritis);
• I also have a lot of problems with my spine (spondylosis and discopathy (medic III) in L spine segment, small scoliosis of chest spine), chondromalacia of the kneecaps - both happening to my sister as well) and tenis and golf elbow (never played those sports - just work on a computer);

I have twin sister (living 12 years in Ireland now) struggling with the same spine/knee/fibromyalgia issues even more extreme than me. She has totally different job than I do. We are both undiagnosed and basically everyone thinks we are lazy and crazy. We are 34 now, never had children and any hospitalization injury.

I also have been diagnosed with depression lately - forgot to mention.

What do you think? Are we a lost cause?

 

[Jemima]

Hi agaz,

There's no such thing as a lost cause - please don't even consider that phrase for yourself and your sister!

What you describe could well fit with fibromyalgia, but it would be really advantageous to find a doctor willing to go through the diagnosis process and eliminate any other possible causes of your symptoms along the way.

All of that said, with the suspicion of fibromyalgia, you are empowered to do a lot to help yourself. Even if you had this diagnosis, the extent to which doctors can help is very limited - most of what will relieve symptoms comes down to us. If I were you, I would get really engaged in trying to make the lifestyle changes that should help with fibromyalgia and starting to figure out what your triggers might be, so you can reduce the frequency and extent of flares. Look here for some great ideas on how to get started:

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

I know that experiencing these kinds of health issues can be incredibly frustrating and demoralising. It's also difficult not to compare ourselves to others who have such an easy ride in comparison - especially in the beginning. But, in time, we can learn to look at chronic illness as something that teaches us a great deal about ourselves and about compassion. With self observation and experimentation, we can figure out how to manage symptoms more effectively, and see where the larger journey takes us.

Most fundamental of all, don't look at yourself in a negative light. You are stronger than you know, more valuable than you recognise, and in getting through this, you'll learn the skills that can allow you to turn around and help someone else forwards too. The depression aspect is hard - I know it well, having struggled with depression for more than 25 years now - but please keep the faith that things are going to get easier. There is always a light around the corner, even if at times we can't see it. Good luck to you

 

[JayCS]

Hi agaz!
I did the fibromyalgia test after countless googles of my different symptoms that happen to me for many years now. It said it is very likely I have it.

What do you mean by "the" fibromyalgia test, sounds like sort of an online one? (I ask cos some people believe there is a blood test, which however has almost no evidence.) Online tests can point us in a certain direction, then we can look at the criteria (e.g. ACR 2016), and most of us try to get an official diagnosis, often imagining that docs can help us, which they can only a bit: Meds is difficult, with supps we're often on our own (with forum help). My docs are/were mainly to find or exclude other factors and to prescribe various forms of physio, like acupressure and acupuncture.

What is bothering me the most:

• not exercising contributes to everything aching me

Sometimes it seems that exercising contributes to the Ache, and not exercising too. Some then don't exercise at all, some exercise as much as they seem to be able to and then crash. We have to newly learn our pace, sweet spots, limits.

• while other people can not lift a finger their entire life and are super fine;

Comparing us to the strengths of others is a sure-fire way of making ourselves unhappy....

• I constantly lack energy, could sleep for ages;

That sounds as if you can sleep? Or is it just the wish, due to the fatigue? Lots we can do, but first I('ve) always look(-ed) to meds/supps as culprits and then look for supps, physio, diets etc. that improve pain, energy, sleep, IBS etc.,

• I have many illnesses that are autoimmune (asthma, allergies, nodules on the thyroid gland, IBS and chronic gastritis);
• I also have a lot of problems with my spine (spondylosis and discopathy (medic III) in L spine segment, small scoliosis of chest spine), chondromalacia of the kneecaps - both happening to my sister as well) and tenis and golf elbow (never played those sports - just work on a computer);

We are both undiagnosed and basically everyone thinks we are lazy and crazy. We are 34 now, never had children and any hospitalization injury.

Well, with the amount of your diagnosed illnesses, I can neither see why you should be "undiagnosed", why it should be improbable that you also have fibromyalgia, and why anyone in their right minds could consider you as lazy. Whilst "crazy" we of course all are/become. Finding our new selves and self-advocating is apart of "growing" with fibro.
But not a lost cause: You've found a pointer towards fibro, found your way here, and will find lots of ideas here, like sunkacola's Big Advice Post that Jemima's mentioned above.

 

[sunkacola]

Just want to say I agree with both of the posts above, and heartily so. Please take heart and know that there is much you can do to help yourself (and your sister) if what you have is fibromyalgia (and even if it is not there are things that may help). Never think that you are a lost cause because it is never hopeless. In fact the best news I can think to give someone is that you can all by yourself do things that are likely to help.

I wrote that post that is linked to above because I wish that I had read something like that when I was first diagnosed. I actually think the most important part of it is to believe in yourself and be your own advocate. This is hard when you are depressed, as I know all too well. but I also know that when I started doing some of the things in that post of mine I started feeling better. It did not cause my chronic depression to vanish, but it helped, and I believe that if a person's depression is actually caused by the pain and other symptoms, then it might lift entirely once you feel better.

Please consider this a rescource for you and come here with any questions you may have. This forum is a fountain of information and support, and you are welcomed here.

 

[JayCS]

I did the fibromyalgia test

What do you mean by "the" fibromyalgia test, sounds like sort of an online one?

Ah, yet another thread talking about the test, maybe the one on the main site of this forum, which we didn't even realize ourselves ...