Fibro with Constant neck spasms/pain

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Fibro with Constant neck spasms/pain

Postby Betfred101 » Sun Apr 21, 2013 1:24 am

Hi, i realise many of us have similiar and different ranges of symptoms. But i wanted to talk about mine particularly and see who else has similiar. Also how you guys/galls deal with neck pain/spasms in particular.

Ok, so I am 23 and Male. I constantly suffer from pain that radiates from the back of my skull at the base and from there into my shoulders.

It often seems very similar to the discomfort you get when you *crick* your neck whilst sleeping. However its more than just a discomfort of course!

For me this happens often during the evening when I am trying to wind down and is worse when i'm trying to sleep. I have never been able to simply switch off when trying to sleep and find it very hard to get comfortable.

I have tried the usual's such as a hot bath, massage (from partner :P) different types of pillows etc etc and many various pills. Nothing works and i do at times feel like tearing my neck out which is ridiculous i know! The only thing i do find that helps is my very limited prescription of Clonazepam. There in of course is the problem that the more i use this medication the less it works :yikes:
I'm guessing that many others have had at some point a certain type of muscle relaxant. Does anyone find that on a repeat prescription of a type of relaxant they get consistent relief? Or even better an alternative method from pills that works well for this.
I have found I constantly get spasms in my legs and various other places also.

Ok so all in all i guess i am mainly just complaining but hey ho lol! If anyone can relate that would be brilliant. Please do not by the way mention any of the usual medicines like amitriptyline. :crazy: I know you mean well, but I have honestly tried anti d's, naproxen etc etc.
Thanks for reading :)
Last edited by FluppyPuffy on Sun Apr 21, 2013 1:48 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Fibro with Constant neck spasms/pain

Postby KarenG53 » Sun Apr 21, 2013 5:32 am

Hi I'm sorry you have this at such a young age, :(
I'm female I've had Fibro since the the early 80's when I was 23..... well that's when it was first diagnosed after an electric shock :yikes:
I was totally disabled by it.. it took me a few years to get back to some kind of normal life what ever that is :-? if I'd of known at the time what I had I wouldn't of rested and done nothing as I was told to then.. harder to get back any kind of fitness once it's gone and after a few years your muscle's waste away... but through sheer bloody minded determination and a lot of pain and tears I have a life again... I'll always have Fibro... but it won't ever have me again... :-)

Ok so you want to know if anyone else has neck/head and shoulder spasms, I haven't found anyone else until now who has this..I'm not going to say I'm pleased to know that someone else has it because I'm not.. but I was beginning to feel maybe it didn't have anything to do with Fibro after all :?: mine started in January this year just woke up one morning and couldn't move my head at all without shooting pains into my head..pretty scary doc thought Meningitis so was rushed into hospital, then they thought stroke tried to MRI me but after 3 failed attempts (spasms wouldn't stop long enough to get any images) they gave up.. as you can imagine over the years I have been of every kind medication there is to try and combat fatigue, brain fog, muscle cramps, ect.. nothing has worked in that it did calm down for a week or two then came back but not as severe.. since then it's intermittent episodes... .. I had been on Naproxen too dam things I ended up with stomach ulcers!! and different anti D's to no avail..the muscle relaxants only work for a while and they can't increase the dose otherwise you wouldn't be able to function at all at present I take Tramadol as a last resort, paracetamol and a stomach protector..I did have some success about 10 years ago with Celebrex but as I now live in New Zealand and it wasn't funded here I couldn't afford the $200 monthly script for them.. I since heard reports that they aren't good for you either...what prescription drug is :?:

I've tried alternative medicines but nothing works there either.. massage, infra red electro-stimulation, I've lost count of all the different so called cures :!: :!:

For the leg and arm cramps I take a pinch of sea salt morning and night it seems to help :?: also Epson salts in a warm bath is good...but again nothing takes away that constant niggling...and there are always well meaning friends coming up with the latest discovery no matter how many times you try to tell them you've tried everything there is available...constantly searched online in case there's some amazing new cure...

So my regime is the hot pools here twice a week if possible and the hydra pools at the local pool I know they have them in the UK too but think they connected to the hospitals physio departments :?: worth asking about in the warm water you can stretch your muscles without injury and it'll help keep you flexible.. even when you don't feel like doing any exercise you must try and push through the pain barrier...the alternative isn't an option anymore... bitter experience tells me never go back there again.. as for relaxing it's virtually impossible with Fibro your body is like a cats at the ready to pounce... even in the hot pools my muscles never completely relax..
I'm sorry I haven't got a miracle cure to tell you about..although I will continue to search...in mid September I will be 60 and so I will of had Fibro for 37 years which is more than half my life...you are allowed to complain at times, and feel sorry for yourself, it'd drive you crazy if you kept it all in :crazy: I expect you know how lucky you are as well to have a supportive partner :-) many don't take the time to try and understand... my marriage ended.. I've been given a second chance with a Kiwi guy (the reason I'm living in this beautiful country) he listens, is loving and understanding.. never give up try to keep as fit and healthy as possible... another thing is I have allergies and intolerances to certain foods and drinks apparently that is connected to Fibro too.. and then because of my age I also have to contend with osteo-arthritis crumbling toe sockets and such... oh what fun :nono: .. still I'm better off that a lot of people...

I hope this has explained some for you... I didn't have anyone to chat to or preen any information from... at least today it's recognised as ailment/syndrome and your not made to feel it's in your imagination and some nut case.. :crazy:
And there is so much information available on the web.... I still tend to search more on the USA site's where I found out all about it originally... they are a bit more advanced in the ways and methods..
Good luck :-)
Karen
Last edited by FluppyPuffy on Sun Apr 21, 2013 1:49 pm, edited 1 time in total.
Reason: Made some paragraphs clearer for easier reading.
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Re: Fibro with Constant neck spasms/pain

Postby PennyJ » Sun Apr 21, 2013 9:34 am

Mornin', I too suffer with neck pain and spasms,I injured my neck thirty years ago in a sledging accident but that's another story. But,when I was diagnosed with Fibro I realised that after all these years it wasn't just the accident that caused the neck pain. I did quite often wake in the morning and couldn't move my neck and have had several session with the physio and nothing ever helped for very long. i was finally diagnosed only two years ago and have tried several suggested remedies only some of them worked but completely. I started Pilates last year and that has helped no end ,I certainly don't get the stiffness like I used to. I do neck exercises every day three or four times during the day for about five minutes. don't do them all in one go as it over works the muscles and makes it worse. My doctor also prescribed Gabapentin 100 mg (it's for epilespy but found to be effective for pain) it has helped no end and I am having the low dose, you can go to 300 mg.It also very good for pelvic pain which she prescribed for me in the first place. I did some gardening yesterday and boy do I hurt,so I will be able to increase if need be..Have you had your vitamin D levels checked,I know we haven't had any sun this winter or last summer but it might be worth asking your GP. Mine was extraordinary low and am now on supplements. It is quite common so I am told,anything is worth trying if it a benefit to your wellbeing. Good luck and try Pilates.....Pen.
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Re: Fibro with Constant neck spasms/pain

Postby sorrento » Sun Apr 21, 2013 10:57 am

Hi I have suffered with severe neck pain just as you described initially I was on a lot of medication morphine etc which didn't touch the pain, after a long time of getting no relief from medication I gradually weened myself off the meds and listened to my body , it took me a long time to do this as I was very active before fibro but over time I learnt how and what to avoid doing and to ask for help when necessary re lift ing etc.not that this will effect you but even the weight of hand bag, necklace can trigger my spasms. Good luck
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Re: Fibro with Constant neck spasms/pain

Postby yummyhunnybunny » Sun Apr 21, 2013 12:13 pm

Hello there, I too suffer from neck pain, which radiates around to my jaw, sometimes to the extent of it making me feel really sick. I explain to my Husband its like if I could stretch my arms and neck right up into the air I would get rid of the pain. But I find that really hard to do. I have a very understanding Husband who helps as much as he can but only someone else with the pain can have empathy. I have tried a multitude of pain relief and I have just weaned my self off Amitrityline, which for 6 years made me feel like a zombie! For the first 20 years of being diagnosed I had no help at all it did'nt seem to be deemed as a problem!, I find the only thing that helps for me is to stand in the shower and let the warm water loosen my neck muscles, but even that only last for a while. I had to retire as I worked in a Primary school and its not really the best place to be away from stress! I do hope you find some sort of solution for your pain, we seem to be all different in our mixture of symptoms.....lets hope someone helps us all soon.
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Re: Fibro with Constant neck spasms/pain

Postby FluppyPuffy » Sun Apr 21, 2013 1:59 pm

I have problems with neck pain and spasms, for me it stems from an injury caused by a car accident. That area is now a weak spot which FM tries to exploit at every possible opportunity it can :facepalm: :facepalm: :facepalm: :facepalm:

As well as my cocktail of meds, the only thing I find helps ease things off a little is heat. I have a snake~like wheaty bag that gets zapped in the microwave for a minute or so, and I "wear" it around my neck. As the pain and spasms also radiate out to my shoulders, I've recently acquired a TENs machine which, altho the pain doesn't go away, does help keep things a bit more manageable for me.

Have you tried physio, hydrotherapy or accupuncture??? If not, it might be worth seeing what is available in your area. Your GP should have info and be able to refer you, or at least tell you what you need to do to access them.
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Re: Fibro with Constant neck spasms/pain

Postby SuperCat007 » Sun Apr 21, 2013 2:22 pm

I used to get it really badly starting from the base of my skull like a really bad headache then it would radiate down, I would get cramps in my neck muscles and then it would go down my back. I don't want to jinx it, but I had my wisdom teeth removed nearly 3 weeks ago and since then I haven't even had a hint of it. Not even on the night after the op, it seems to have completely gone. Maybe, if you haven't already, taking a trip to the dentist to talk about wisdom teeth might not be a bad idea. If you've already had them removed then apologies!
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Re: Fibro with Constant neck spasms/pain

Postby kitten » Sun Apr 21, 2013 7:50 pm

I Also suffer with the same I have had them since September just around Christmas I would have given my neck to the local butcher , it was both sides of my neck, my muscle at the front up the side of my face into my eye which was swollen behind my ear the top of my head , was given Diazepam and codeine , spent Christmas Eve holding the side of my face at the same time I had pains going through my hands ,
Christmas Day spent on Codeine at the moment I have restricted movement either way of my neck like everyone else I have tried everything to try and get some proper relief from the pain ,what ever you take once it wears off you are back to square one

I am still waiting for Physio and have been since the end of January :evil:

Let's hope when we get some warmer weather we may get some relief from all this pain
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Re: Fibro with Constant neck spasms/pain

Postby Betfred101 » Sun Apr 21, 2013 9:08 pm

Thanks everyone for your replies greatly appreciate it all :) Also thanks Fluppy for clearing my essay up a little ;)

Ok. So i recently had an x ray at the dentist so i'm pretty sure that i have no naughty wisdom teeth coming through. Which is great because i hate the dentist. I had actually considered it before though so excellent idea SuperCat.
I may well try some sort of therapy and I think i know someone with a TENS machine. Though no idea how they work might have to ask Mr Google.

I have been meaning to have a word with my preferred GP asap but shes so popular its a pain getting an appointment :yikes:
I wonder if amazon do those wheaty bags i did have one before but lost it sadly. Thanks for reminding me FluppyPuffy, darn your name is a pain to type correctly :crazy: lol
Hmmm, I have been taking Vitamin C tablets lately, i may well try Vitamin D too!
Thanks for mentioning this PennyJ I have read a lot about this would certainly be interesting to find out.

So all in all I totally agree with you I have gone past the stage of denial. I did like to think I need more and more strong pills to help me. But slowly coming around to realizing as irritating it can be more light exercise is one good way to help muscles. Though some days as we all know its difficult when you feel devoid of all energy.
Thanks very much everyone for your support and I feel for all of you. It is such a pain hearing people say *I know how you feel* :evil:
At least we here actually do!
So I have been walking the dog again, know we have some slight warmth at long last outside. I used to love long walks, so I will try taking it slow and seeing what happens. Along with the other suggestions here I will let you know how it goes :mrgreen:
Wishing happy pain free days for everyone hehe :)
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Re: Fibro with Constant neck spasms/pain

Postby kitten » Mon Apr 22, 2013 8:00 am

Hi Betferd 101

If you google Myofascial Pain Trigger points it's amazing what certain muscle can cause .when I went to see the Rheumatologist in January ( hence still waiting for Physio) she told me it was the TRAPEZIUS & the STERNOCLEDOMASTAD muscle that had gone into
muscle spasms , when I came home I looked it up , it seems we all have more or less the same symptom's, might be worth having a look to see if it applies to you , I know it certainly fits in to mine
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Re: Fibro with Constant neck spasms/pain

Postby Betfred101 » Mon Apr 22, 2013 11:17 am

Thanks very much for that. Looks very interesting I have some reading to do it seems :-P
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Re: Fibro with Constant neck spasms/pain

Postby FluppyPuffy » Mon Apr 22, 2013 8:28 pm

You can get the wheaty bags in chemists, pharmacies, and healthy/alternativey/complementary treatmenty type places, as well as online. They come in all sorts of shapes and sizes and designs so there should be something to suit you. I have a :teddy-bear: shaped one as well as a strange :cat2: shaped one plus the scarfy~snakey shaped one :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

Linky with some info about how TENs can help http://pain.about.com/od/treatment/p/tens.htm Might be worth a read with you looking for alternative ways to make things a little more comfortable.

As for my screen name, just go with an abbreviation of it, most people tend to :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

Serious hat back on now.......wrt trying Vitamin D, before you do this, consider talking to your GP about it, here's what I posted on another thread about the supplement
FluppyPuffy wrote:It might be worth seeing your GP about this recommendation before you start taking anything to see what levels you have in your system. Altho it is very rare, having excessive levels of Vitamn D in your body can be a potentially serious condition.

It usually comes about by taking extremely high doses of the supplement, which is why talking to your GP about it before you start anything is a wise move as they should be able to tell you the right level you need to take.

The main issue with Vitamin D Toxicity is the build up of calcium in the blood system which can cause sysmptoms including poor appetite, nausea and vomitting. Weakness, the need to pass water much more frequently, and kidney problems can also occur. Treatment includes stopping taking the excessive doses of the supplement, and depending on how someone is affected, intravenous fluids may be needed and/or additional medications.
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Re: Fibro with Constant neck spasms/pain

Postby Betfred101 » Mon Apr 22, 2013 11:09 pm

Excellent thanks, i will try to make an appointment with my GP as soon as possible!
Also i borrowed a friends TENS machine today and....just WOW
I'm still twitching so i think i need to research more and probably ask my GP about the placement of that too. But the amount of relief it seems to have given me in such a short amount of time is just amazing.
Can not thank you enough for suggesting it :chicken-dance: :clap: :clap: :clap: :clap: :clap:
Cheers FP :P
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Re: Fibro with Constant neck spasms/pain

Postby Depp_lover1980 » Tue Apr 23, 2013 10:18 pm

I had numerous neck issues, which were drastically diminished with drastic measures - I have botox injected into my neck every 4 months through pain management at the hospital. It has transformed my life, start pushing for it now and get your own transformed.
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Re: Fibro with Constant neck spasms/pain

Postby Betfred101 » Wed Apr 24, 2013 10:38 pm

Ooh crumbs no. I realize i put many medicines into my body.
But injecting with toxins....noooo thanks :yikes:
So glad to hear you yourself get good relief from it though. That's excellent !!
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