New fibromyalgia symptom

Bev Murphy

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Dec 16, 2023
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Hi I’m new here and have had fibromyalgia probably before it was an identified illness I’m 52 and have struggle with chronic and constant pain since birth. For last 18 months I have had a awful thing happen to me since waking. I wake hitting myself slapping myself and it can go on for hours. I’ve been trying to find if this is a symptom of fibromyalgia and finally I got my answer. It’s on the website ncbi.nlm.nih.gov and in it states research has began to explore the rate of self harm among patients with chronic pain and syndromes such as fibromyalgia. All I can say is to me it’s like people with Tourette’s syndrome they can’t hold in there ticks and I have to self harm to get realise from the feeling in my body I thought I was loosing it. I’m I the only person who this happens to I’m so lost if any of you out there experience the same thing please let me no thanks research found online in enclosed photo.
 

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Oh dear, sounds very unpleasant, whatever it is.
Good you're reaching out at last, to save yourself a lot of torment.

What you describe sounds to me more like an involuntary tic, sort of semi-deliberate, as you say like Tourette's...
rather than the deliberate, conscious self-harm to hurt, which can become suicidal, and can like described in the article be associated with the frustration and depression of the weariness of a chronic condition.
I'd guess and you say it's more the former.
But then I'd say it has nothing to do with fibro and so nothing to do with the article you found which is only about the latter.
I'm not sure tho, cos Tourette's does include self-harm, and that can be described as "deliberate".

And whatever, it's crucial to get a doctor to help with it!
A neurologist would be my first bet, sleep lab my second since it comes directly upon waking - maybe before waking, too?

Have you tried anything med- or supp-wise that is anti-epileptic, anti-cramping, calming, and does anything you take or do makes a difference?

The core question to me is, is it unintentional like a tic, or a cramp(?!), or deliberate, to hurt yourself for some reason or somewhere in between?
And can your mind influence it, what happens if you try?

Another question is whether you are fully conscious?
Or sort of half-asleep or half-unconscious?

Mysterious... 🧐 - but I'm sure doctors should be able to help at least corner roughly what it's from, e.g. by measuring your brain waves whilst you're doing it and before, while you're sleeping. That can then help you decide what you want to do about that.
 
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@Bev Murphy , what doctor(s) have you seen about this and what have they said?
 
could be caused by the tablets you take! ie a side effect
 
I don’t get it everytime I wake up it used to be every other month but recently it been every week. I wake up with a tension build up In my body i have pin picks all over my skin with restless legs the tension just build and builds until I have to hit myself to make it subside . I can’t explain the feeling it’s just awful. I was diagnosed with chronic pain as a 2 year old with ibs at 16 years old and fibromyalgia at 40 years. I’ve done a lot of reading and research on ibs and fibromyalgia and why the self harm is happening. The research I posted isn’t the only website that state people with chronic pain fibromyalgia ect can self harm. I don’t no a lot about it but it’s the only explanation I have found that make sense to me. I am going to my doctor to open up about what happening to me, I haven’t before as I was just dam embarrassed about hurting myself and because it wasn’t happening regularly I felt I could handle it but now it’s getting alot more frequent it time to find out what’s happening. Thanks for replying I really appreciate it as I don’t have anyone to talk to who understands just how hard it can be living with debilitating illnesses.
 
Have been on the same tablets for many years so I no it’s not that. Just hoping my doctor can help with whatever is causing this. Thanks for your reply appreciate it.
 
Just wanted to add a new research paper on self harm in pain and fibromyalgia patients
 

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I am going to see my doctor tomorrow. They are normal not to good with fibromyalgia just take this antidepressant try this pain drug ect. This time I’m not stopping till I get somewhere thanks for the reply.
 
I came on this forum to see if anyone else was having any symptoms like mine. Was hoping to find someone going through the same thing going to my doctor is a given talking with fellow sufferers helps.
 
Hi I spoke to my doctor today and as I expected it’s a symptom of anxiety panic disorder associated with those who suffer with chronic pain and fibromyalgia. I have to say even though I found the online research that stated self harm can be related to chronic pain and fibromyalgia I was so hoping it wasn’t. I’m devastated to say the least I’m a strong women who has cope with pain all my life but this self harming is just that 1 symptom to far. It’s all to do with anxiety, panic disorder ect and the bodies inability to release high tension and since I’ve suffered with anxiety since my teen years showing no signs of self harm research suggests it’s apart of reactive fibromyalgia (apparently that what my doctors says). So it’s back onto fluoxetine and diazepam for me more tablets to take. My symptom are on waking full body vibrations pin pricks all over my skin and an awful feeling of which start in the pit of my belly and just grows until the only way to realise it is punching slapping myself (I no it’s sounds crazy) it then builds again and the cycle continues. It doesn’t happen everytime I wake up maybe once every 5 weeks but I had it twice in a week which cause me to do research to see if it was related to chronic pain or fibromyalgia. Im very happy that no one on this forum has commented that they suffers with the same thing its awful and I wouldn’t wish it on anyone. Hurting oneself goes against ever fibre of my being and it’s really scary to go through praying the fluoxetine and diazepam put a stop to this awful symptom of fibromyalgia.
 
I no it’s sounds crazy) it then builds again and the cycle continues.
It doesn't that sound crazy to me. Reminds me of when I didn't have my tailbone pain under control and felt like sticking a hot rod up or down my spine. Or when I didn't have my water intolerance causing an itch all over under control that also made me go crazy. That was in my 20s and I thought I might never be able to work.

Is it really a symptom of fibromyalgia? I think it helpful to think of it that way, because yes you have a strong emotional response, so strong that you get physical, but what you are doing is sort of a coping technique because of an absolutely intolerable sensation that sounds worse than just pain. So the coping technique may be psychological, but its trigger is an internal symptom that you are "beating down". And that to me calls for finding ways to decrease that unbearable sensation. The sensation may be neurological and treatable with neurological meds, but I can imagine things like warm or cold washes or showering might alleviate it, too (or whole body cryotherapy). Actually I spose I'd try all the fibro treatments on it, incl. manual therapy, acupuncture, relaxating exercises and supps, not sure about diet or identifying triggers.... but...:

It doesn’t happen everytime I wake up maybe once every 5 weeks but I had it twice in a week
(This relieves me, that's bad enough, at first I thought you had it every day!)

Well OK, if it happens every 5 weeks, then you might be able to identify a trigger either the night, day or days before, or building up.
Like my seizures, for which I've found the amino acid GABA for serotonin.
Also interesting that you only have it once in a row - how come it doesn't regularly come for several days in a row?
 
Thank you for your reply you make alot of sense and have given me alot to consider. I think it’s to do with anxiety and my panic disorder which goes under the umbrella of fibromyalgia rather than it being a fibro symptom in its self. The way you explain it as a coping technique because of an intolerable sensation and a trigger that I feel I have to beat down is spot on. My doctor seems to just want to add or increase my meds rather than finding out the root cause which is getting really frustrating.
I’ve look for a trigger but haven’t found anything I do in the previous days that pacifically set it off.
It’s started out happening every 5 weeks but has become more regular in the passed month which prompted me to do research and reach out to my doctor. My problem is my doctor tends to put all new pain/illness as a fibro flair up I feel he’s diagnosed me before I’ve even seen him. Had kidney pain a few years ago doctor said fibro flair up but I new it was a totally different pain turns out I had 6 kidney stones in left kidney and 4 in the right. All my doctor did today was to put me back on fluoxetine and diazepam which only masked the problem. I will start back on them but if the symptoms continue I’m not stopping until I get some sort of help and relief. Ive increase my acupuncture to 2 sessions a week starting today to see if that will help.
Sorry I didn’t point out it that’s wasn’t happening daily in my first post heaven forbid it ever gets to that.
I will keep you updated as time passes again thank you for your reply it nice to talk to someone who understands.
 
I think it’s to do with anxiety and my panic disorder which goes under the umbrella of fibromyalgia rather than it being a fibro symptom in its self.
"Umbrella" still sounds as if anxiety and panic somehow "belongs" to fibro, while I'd've thought it's a separate co-morbidity, but unfortunately associates and exacerbates.
No problem either way, except: I hear your doctor putting everything down to fibro, rather than separating, and that would fit in that vein. Whilst in my experience it has got me much further to separate symptom and symptom areas and tackle each in itself.
Maybe a test question for more clarity would be if the anxiety and panic disorder started with or later, e.g. as a result of fibro, or it was clearly there before.
I do understand your doc too however, not trying to find a root cause, he's just trying to simplify a complex, overwhelming matter to one thing, fibro, even tho no one actually knows what that is, before he feels incapacitated himself...
But you thinking that is masking it is exactly my attitude.
Even following his idea tho of masking, there's a route he doesn't seem to see, that it's central sensitisation (nociplastic) on the one hand, or neuropathic on the other.
If it seems more like sensitisation what I'd try is electrotherapy, like a TENS or more specialized: microcurrent, to "tickle" and "trick" and distract your nervous system with a different trigger. (This actually is a similar principle to people who want to avoid self-harming by distracting with various "skills".)
If neuropathic as meds seem viable, then praps to try gabapentin or something along that vein.

But good that you're trying to increase acupuncture, hope that helps, because that too might "tickle" the right places.

Spawned by the distracting idea, you might actually some of the many techniques / alternatives there are for people to help them stop themselves from self-harming. These might work even better for you than for them, because there's is often personality rooted and mainly emotionally triggered, whilst yours is more an actual physical stimulus / sensation than the emotional one causing you to freak out. Also because you the "self-harm" aspect is resonating with you, seems to be fitting and something then to take "seriously".

But again that is masking it.

So turning back to looking for a trigger and not seeing anything the days before, it'd seem the hours before are the place to look and your description: Restless legs you say - but you haven't had restless legs syndrome, RLS, checked, it seems? I'm even just thinking it might all be just that! If so levodopa / L-dopa is a med that might help. That was something my sleep lab doc tried on me altho my sleep lab results didn't show any RLS. Didn't help tho.
But if that doesn't turn out diagnostically or therapeutically fitting, I'm wondering if you feel it's coming from your nerves (you say pins and needles) or your skin (dry or irritated?) or back/spine, esp. lower spine as you (legs) or 2 or 3 of those. That yucky itchiness in my 20s I mentioned above was a combination of dry skin, back pain/irritation and nerves overreacting, so I had to tackle all 3 (I think it was 4 actually, can't remember).

The better you learn to describe the feeling, the better a possible trigger can be identified. The more you mask it and dull your brain, the less that's possible.... So the route depends on your preferences, but can be changed any time when you feel it's not what you want.
 
Hi, I have posted something similar that I am worried about. I have had fibro for years but this is new to me. My entire body is vibrating/tingling and I have no idea why. My GP wasnt interested and just sent meds to Boots but I am absolutely scared stiff this is something more serious (stroke etc).
I have never had this before. My heart is also feeling like its beating out of my chest and my upper body is extremely painful as well.
Is this all linked ? Do others suffer from these things as well?
What's the tingling / vibrations thing all about ?
 
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