Head pain - anyone else get this?

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Head pain - anyone else get this?

Postby heffi » Tue Oct 28, 2014 1:25 pm

Grrr! Like many of you, I expect, I am so fed up with this condition - I just want to feel 'normal' again. I am very lucky, I don't have severe symptoms and I can still work and do stuff if I pace myself, although usually asleep on sofa every evening after dinner. Sometimes I do doubt that I have actually got Fibro. I initially I was told I had health anxiety and it was all in my mind, this is true to the extent that I am always worrying I have some other undiagnosed issue because new symptoms are always coming along.

So, I wanted to ask if anyone else has head pains? I don't mean headaches or migraines which I know are quite common and I get sometimes, but pains that move about on the head, sometimes feeling almost external, like on the surface or shooting pains, or weird sensations. It's very difficult to describe. Yesterday I had these pains on the left side of my head, today they are on the right. Sometimes on the top, then the side and sometimes over my ear, my right ear feels almost blocked. I also have lumps and bumps on the scalp, sometimes these are tender and itchy spots, for which I have been prescribed fungal shampoo.

I've discussed this with my Doctor twice and she says it is all down to the fibro. Basically if the pains move about then it is fibro. She says there are muscles and nerves all over the scalp leading from the neck and this is where it originates. I suppose this makes sense. I have bad shoulders and neck at the moment although the leg twinges seem to have gone. I don't take any medication, just painkillers when I have a flare up.

I don't want to keep going back to the Doctors every time something new comes along as it always seems to be the fibro. Can anyone relate to this?
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Re: Head pain - anyone else get this?

Postby jrules1fair » Tue Oct 28, 2014 1:48 pm

I have mysterious pain in my neck and head a little like you suffer. I have been diagnosed with chronic pain syndrome towards the fibromyalgia end of the spectrum i also suffer from extreme fatigue so you are not alone unfortunately other than medication and therapy i am not sure if there is anything else that will help keep fighting it and dont take no for an answer
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Re: Head pain - anyone else get this?

Postby Lizee » Tue Oct 28, 2014 1:49 pm

It's something I experience frequently but I'd always associated it with my chronic migraines as they seem to me yo be a warning of impending migraine. Hope this helps
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Re: Head pain - anyone else get this?

Postby FluppyPuffy » Tue Oct 28, 2014 2:00 pm

:welcome: to our little escape from it all Heffi :cow-wave: :cow-wave: :cow-wave:

I've popped you into this part of the forum as it is a more suitable board for what you are asking about, so will hopefully mean you get some helpful replies :fingerscrossed: :fingerscrossed: :fingerscrossed:

I have a constant headache which often becomes a full~blown migraine which I think tends to mask similar sorts of pains to what you have described. Sometimes tho, they find a way to burst thru the headaches and migraines and add their intense effects to the mix of things for me. Sometimes they will move around, almost like there is some sort of creature very slowly creeping under my scalp. At other times tho, it can feel like I have an ever~tightening hat on, and it only tends to go if I can have some undisturbed sleep. As this doesn't always happen tho, these sensations can sometimes last for days, even weeks on end. At times I feel like :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: is the only thing left to do to try and distract myself from how it makes me feel :hit1: :hit1: :hit1: :bricks: :bricks: :bricks:

The reasoning behind it from your GP agrees pretty much with what mine has said about why it could be happening, but it still doesn't give us that absolute and definite answer that we're looking for.

I can understand your not wanting to visit your GP with each new symptom or problem that may arise, I've often had similar thoughts and feelings over the years as well. However, putting everything down to FM is not a wise thing to do as other illnesses, problems and conditions can sneak in and take hold under the guise of FM, some of which, if not treated quickly and suitably, could lead to additional, even much more severe problems. So, as much as it may be frustrating to do so, having something new checked out does tend to be the best thing to do.

When you have a moment, you might want to pop over to Where To Say Hello. Here, if you want to, you can tell us a little about yourself, what you have encountered on your FibroQuest, and what has brought you to our FibroFamily.
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Re: Head pain - anyone else get this?

Postby heffi » Tue Oct 28, 2014 2:19 pm

Thanks for the replies everyone, it is reassuring to know others have similar symptoms. As the Doc has told me twice that it's the fibro I am holding off going yet again, for time being anyway.

I will post on the other thread Fluffy 'tho I am boring myself even with the saga! lol! I love the cow smilie - it's just right for a heffi! :cow-wave:
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Re: Head pain - anyone else get this?

Postby FluppyPuffy » Tue Oct 28, 2014 2:22 pm

It will be lovely to meet you Heffi :cow-wave: :cow-wave: :cow-wave:
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Re: Head pain - anyone else get this?

Postby charlotteerika » Tue Oct 28, 2014 4:30 pm

I started to get this a few months ago. We forget we also have muscles on our head! If we have muscle pain everywhere else why not our heads?! I have bought one of those physio injury ice bag so that I can apply it to my head to ease the inflammation, it really works!
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Re: Head pain - anyone else get this?

Postby Gracious » Wed Oct 29, 2014 12:07 am

I get head, facial and neck pain, along with migraines. I tend to be in a constant head pain state. I find it less distressing knowing the areas where the pain is and the associated nerves in that area (Nerve structure shown in diagram below). I visualise the area where the pain is and breath into it, to accept and relax into the pain.

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We have a tendancy to tense up with pain, especially head and face pain. After 25 years of it you get to a point where you acknowledge its part of you. That does not mean you have to give up and give into it. If its really severe and is totally impacting on your life, you have to pursue as many options possible. If it becomes unbearable you should see your doctor to pursue treatment options.

I never pushed hard enough with my head and facial pain. Only now after 25 years am I being considered for nerve block treatment and if that does nothing then its a 5 day stay in hospital on a drip for infusion treatment . My head pain prevents me functioning for long periods of time and can lead to suicidal issues for me. Its took my doctors far to long to see the impact this has had on me and my life. I take responsiblity too for not speaking up more and demanding more help. I accepted the stress and depression excuse too easily as I was feeling that way.....Of course I was, wouldn't anyone be, who was in constant pain.

What help me with chronic pain, was learning mindfulness and developing awareness and observing what thoughts, emotions, memories and senstations that come from the actual pain. Its helped me to relax better and reduce tension and additional secondary suffering. Through acknowledging all the diificult thoughts, feelings etc and then letting go of them (which basically means to defuse from them) and has made a huge difference in how I now manage my emotional pain, which we all get when dealing with chronic pain. Its enabled me to differentiate between primary and secondary pain, giving me the strength to speak up for myself with the doctors and specialists.

I would definately recommend learning some relaxation and mindfulness skills for management of intermitting Fibro pain, where ever it is in the body. If only to reduce any secondary suffering. But also keep your doctor well informed of what your experiencing, dont let them be complacent with you.

With loving kindness
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Re: Head pain - anyone else get this?

Postby heffi » Wed Oct 29, 2014 11:38 am

Thank you so much to everyone who has shared their experience of this. Not only on this thread, but the 100 people who have posted on the Facebook thread. I don't feel so alone now, as before I felt I was truly going mad with this.

Thanks to Gracious for posting the nerve chart, really interesting and you can see the nerves in the neck go right up onto the scalp which is how my pain seems to travel. It was bad yesterday and ended up in a bad headache which lasted all night. Feeling better today though. :-D

I'm very interested in the mindfulness and relaxation aspect. Is there any particular book/ course/ website you could recommend? I need to do something to fight this, when it starts to take over I imagine all sorts of things.
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Re: Head pain - anyone else get this?

Postby Gracious » Wed Oct 29, 2014 10:21 pm

Heffi, there are many courses and books. For the purpose of Pain Management, I would look into the following:

Courses:
Pain Management Course, run by Pain Clinics. An 8 week course which has mindfulness techniques within it. If none locally, you may find your local Buddist Centre may run some Mindfulness courses. My local Buddhist Centre did a course called "Breathworks" which is specifically for individuals with long term illness and chronic pain. I did three courses within my local centre as there were no Pain Management courses local. At no time was there any talk of converting me into a Buddhist, they just wanted to encourge individuals to be mindful and aware and you learned techniques on various types of meditation and they educate you on secondary suffering etc.

Books
If its not possible to attend a course then there is a book used which is based on the full Breathworks Course covering everything I was taught. That book is "Living Well With Pain And Illness: Using mindfulness to free yourself from suffering" by Vidyamala Burch (http://www.amazon.co.uk/Living-Well-Wit ... 0749928603). I have the book so happy to recommend.

CDs:
The course sometimes comes with CDs for body scanning and mindfulness of the breath. There are loads out there, even on You Tube. Below are easy starters.
Body scan: http://www.youtube.com/watch?v=AKQAmtfra3k
Mindfulness of breath: http://www.youtube.com/watch?v=Rah4IHHZyZU
Defusion Meditation - Leaves on a Stream: http://www.youtube.com/watch?v=jovZDkEnFng
(Learn the body scan first then move on to mindfulness of breath. If struggling with a busy negative mind, use the defusion meditation)

The are also mindfulness based therapies. Known as Acceptance and Commitment Therapy (ACT for short). This combines a mix of the best elements of CBT and mindfulness. I currently get ACT Therapy from my pain clinic psychologist. So you could ask your doctor if their is ACT therapy available within your local NHS serivces. Sometimes they run group sessions and one to ones. They tend to assess individuals to see what would suit best.

If there is no ACT therapist available the book my psychologist recommended, which is full of mindfulness exercises, was:
Get Out of Your Mind and into Your Life: The New Acceptance and Commitment Therapy by Steven C. Hayes (http://www.amazon.co.uk/Get-Your-Mind-i ... +your+life). It covers everything that I have experienced in my sessions. ACT therapy is experiential, not so much a talking therapy, more about doing exercises for developing awareness of your observer self and mindfulness of your thoughts feelings, sensations etc and working towards a valued living life.

I could go on, but don't wont to overload. These are all good starting points for beginners with Chroinc Pain Conditions. The mediation links I have given will let you know if its a skill you really want to develop.

Hope this is of some help
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Re: Head pain - anyone else get this?

Postby heffi » Fri Oct 31, 2014 11:46 am

Thank you so much Gracious for those links.

I live in France, so NHS is not available to me. Having said that, I never really got anywhere with the UK doctors. Fibro seems to be much more accepted here, as is consulting the Psychy.

I will definitely have a look at the books and links.

thanks again.

H
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