Concerned Fibromyalgia Symptoms Could Be Something Else

[lizzie1991]

I am a 32 year old, I smoke Cigarellos. When I smoke them it appears to affect the leg pain. I know smoking is bad for blood vessels and I believe I have PAD. This is not being took seriously as I am 32, I am not overweight and quite short so I am 6 stone I have a genetic condition called hypocondroplasia and most blood tests are normal but I have a positive ANA of 1:320. The possibility of autoimmune is dismissed also. I understand I have Fibromyalgia regardless of diagnosis. However I think PAD is ontop of it among other issues, I have focal epilepsy. I get aches nearly everytime I walk, I get sharp pain in thighs and upper legs and hips sometimes settles with rest. I hope I don't lose limbs. I am very concerned has anyone else had this. I am stiff in the morning with stings around body. My legs are tired straight away. I lack more concentration than I do anyway I have dyspraxia and dyscalculia. I get nerve pain and I take 300mg of lamotrigine and 250mg of pregabalin. No painkillers help my legs. What can I do? Has anyone else got this? Surely if it was PAD it would stop if I rested? I know I have week hip flexors.

 

[BlueBells]

Hi @lizzie1991

First up, we are not medically trained, we are just people that have the common fact of fibromyalgia.

I've tried to read your post a few times, but "blocks" of writing make it difficult for me to read. Hitting the 'enter' key a couple of times after a few sentences will break up blocks.

I understand I have Fibromyalgia regardless of diagnosis

Do you mean you have been diagnosed, or do you think you may have fibromyalgia?

I smoke Cigarellos. When I smoke them it appears to affect the leg pain

In what way does it affect the leg pain? If it worsens, is it wise to keep smoking? If it eases, maybe the doctor could give you an explanation.

Also, if you believe you have heart issues, have you tried to quit smoking?

 

[sunkacola]

Greetings, and welcome to the forum.
You ask "What can I do?" Well, for one thing, the first thing, you can stop smoking!
You already know that this is a dangerously unhealthy habit, for anyone, and you also say you think it is negatively affecting you so.....stop.

You say you think you have fibromyalgia "regardless of diagnosis". May I ask what makes you think this? What tests have been run to determine what is going on with you? There are many things that have similar symptoms to fibro, and it's important to get tested for them before deciding on your own what is going on. You say you believe you have PAD. Have you been tested for this, or is this something you have come to on your own?

I ask these questions because it is actually very dangerous to your health to decide for yourself what conditions you have. You need to get the relevant testing done and let the doctors, who know about these things, tell you what conditions you test positive for and what you do not.

What you can do is improve your overall health by stopping smoking, eating the healthiest possible diet for you, getting regular exercise of some kind (any kind, any amount, is better than nothing), and taking the best possible care of yourself. All of these things are within your power to change and to improve.

 

[DebMarPir]

I would think you are way too young for peripheral artery disease. My Mother was about 70 when it required some veins zapped and sores treated. Also, I and others have a positive ANA but it can be there and not mean autoimmune. I was checked out and two rheumatologists found nothing. I agree with the statement above, you need a good internist to make a diagnosis of fibro after everything else is ruled out. For instance. I had some numbness that came and went, and it never came back, but I had to have MS ruled out. PT can certainly strengthen muscles, and that may involve scans of your spine, etc. You’re underweight, which could be a symptom or the result of your pain. Treat each symptom. Don’t not because you will feel better and they will add up to fibro if you have it. Remember, the two key aspects of fibro are insomnia/sleep issues and pain. You didn’t even mention sleep-think about it?

 

[sunkacola]

Remember, the two key aspects of fibro are insomnia/sleep issues and pain. You didn’t even mention sleep-think about it?

Just to be clear, not everyone with fibromyalgia has insomnia or sleep issues, although it is common for people to have trouble sleeping because of physical pain. However, to say that "the two key issues" are those two things is not fully accurate.

 

[JayCS]

Sleep issues: fibro can be without, but sleep issues can be independent of pain.

Just to be clear, not everyone with fibromyalgia has insomnia or sleep issues, although it is common for people to have trouble sleeping because of physical pain. However, to say that "the two key issues" are those two things is not fully accurate.

Not everyone has sleep issues, so it's not one of "the two" key issues for everyone, I agree - at least if by 'key' we mean it's a prerequisite/'necessary'.

But just to get that "aside" even clearer:
It's one of the 6 possible main symptoms additionally to pain, of which we have to have quite a few to "score".
But it's in the first 3 = fatigue, waking unrefreshed, cognitive symptoms (= 'fog'),
which can weigh up to 3x as much as the 2nd 3 = headaches, pain or cramps in abdomen (= 'IBS') or depression.
So it's often a major issue, even tho it's not 'have to have'.
So we can still ask and think about further symptoms other than pain, otherwise it might be CPRS.
According to the criteria we do "need" at least 5 points on the "severe symptoms", pain isn't ("usually") enough - we can still get diagnosed for individual reasons of course, the criteria aren't cut in stone, they aim at being pragmatic for not leaving anyone out, but not putting anyone in that will likely have something else.

However fibro can come with more than enough sleep issues that are precisely not only caused by physical pain, they are often independent and "inexplicable", as in my case.

Me: I could always sleep well before fibro, whenever I wanted to, even despite pain. The insomnia started with my full flare.
Sleep was one of the first things I worked on partly successfully not only by getting my pains better under control, but tons of other things.
Then I got all my pains under control, so waking up was hardly ever due to pain / discomfort, but I was still up 1-3h per night despite having to prevent 30 triggers and to take 12 sleep supps that helped a little.
My sleep lab psychiatrist guessed it might be a combination of several known sleep disorders that were singly too slight to be detected by him. Not even his suggestion of levodopa to see if part of it was RLS worked, however.

What now works excellently for my sleep is trigger prevention, most of the supps, "blue" "daylight" only in the morning (etc.) and LD N. If I forget one of these that can cost me one to several hours of sleep, despite no pain to mention.

 

[sunkacola]

"blue" "daylight" only in the morning

Jay, what is this?

 

[JayCS]

"blue" "daylight" only in the morning (etc.)

Jay, what is this?

Ah, sorry, it's only what I've already been talking about a lot, so I kept it (too) short:

Looking to the sun/sky/a daylight lamp for at least 5'-15' as early in the morning as possible, then again 5' in the afternoon.
(If there's no sun, the brightest part of the sky, and longer, and/or a daylight lamp.)
The "bluer light" from "above" in the morning and then the reddening light "lower" in the afternoon helps build up melatonin and break down cortisol. That's incl. all artificial lights down in home and shops and greatly reduce screen time in the evening.
Also aim to sleep from 10 to 6, pulling it forwards bit by bit if it's gone askew by getting up earlier bit by bit.

(I'm dead tired every morning, even more if I sleep enough or too much, but looking at "the early sun" instead of succumbing wakes me up soon and makes for a much better day. The blue light makes me a bit nauseous, but it's better for me.)