CS Flare ups

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Hi everyone. I've been a CS sufferer for over 15 years now, it was discovered 5-6 years ago after 10 years of physio when it never got better and I was in obvious decline. Anyway, long stort cut short; I was offered surgery (fusion of 3 vertebrae C5-7) but after researching it's effectiveness I decided to go down the conservative route as there seemed to be more people who were just as bad or worse following surgery. I've managed pretty well up until now. I'm currently having another flare (I get a couple or so a year) and have new symptoms including 3 fingers and thumb with tingling/prickling, previously it was just my forefinger and thumb that were numb. If I turn my head to the right, the prickling moves up into my upper arm and I have horrid nerve pains all down that arm and shoulder blade with each breath in. I already take amitriptyline at 50mg per day and pregabalin 150mg twice a day. I know I can increase the doseage, but really don't want to if it can be helped. I'm hoping it will die down again, but I'm worried I may be in decline. A typical flare for me is usually an increase in my usual symptoms, this is the 1st time I have had new symptoms, hence why I'm worried.

How do your flares affect you and how long do they usually last for?

tia

Sarah

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  • Posted

    Hi Sarah,

    Im 45 and have suffered from CS for about 4 years now. I'm never truly without pain, but sometimes when it gets worse and I have a flare up its normally because I've done too much.  Being a mum of 3 young children takes its toll!  I make sure I do my exercises, sit for approx 2hours before bedtime with a plug in heat backpack on which covers my neck and back, take my Amitryptline and hope for the best! I did too much last Saturday and was up in constant pain all night.  Sunday I decided to do nothing and kept the heat pack on all day and to my amazement, I had quite a good nights sleep Sunday night.  I also go to a private Acupuncturist which helps as does my tens machine. I find looking down for long periods of time kills my neck and being a cake decorator, I've had to stop making cakes because of this.....gutted! I think from my experience i try to stop doing too much and to keep my neck as mobile as possible by doing my exercises the hospital gave me. I do hope your flare up eases soon xx

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  • Posted

    Hi Sarah

    I have CS only diagnosed around 18 months ago.  Until then treating me for severe migraine.  Unfortunately I have pain 24/7, in neck, shoulders, arms hands and fingers, also down my back.   I am on 30 pills daily including morphine and liquid morphine for break through pain none of which really help.   I have severe pain which comes on every 6-8 weeks and is so bad it makes me vomit so I have to either go into hospital to have drugs intraveneously or call doc for injections.   Doesn't appear to be any reason why I have really bad flare ups every so often.   I limit what I do and have wheel chair so I can go out when pain really bad.  One doctor told me it doesn't matter what I do the pain will build up anyway as it comes from fluid pressing on disc which in turn presses on nerves and it will only go when it feels like it i.e. fluid drains way.  Not very helpful.  Just have to put up with the severe pain and try to knock myself out with as much morphine as i am allowed so I can sleep through pain for 4/5 days.   Sorry if this is depressing you. I don't mean it to.  I think you are in early stages and possibly a lot younger than me.   I am 67.   I think we all have different symptoms depending on the severity of the condition.  Just take it a day at a time and enjoy the days when the pain is not too bad \and get through the flare ups as best you can.   Keep in touch with your doc who may be able to presribe different medication when your pain is at its worst.  Sounds to me as if you are very early stages and nowhere near where I am so don't think too much about the future and if you will decline.   We are all different and our symptoms for this disease all vary.Keep your chin up and keep posting on here.   We can all have our moans on here.   Better to be able to talk to people who understand what you are going through and how you are feeling.  Kep in touch and let me know how you are.   If I can help you to stop worrying I will try my best. Take cae.

    Arran103

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  • Posted

    Hi Sarah

    welcome to this page i am 59 and i have have had pain for 49yrs started off

    with curvature of spine with spondlosis of neck which in turn leaves me with pain in arms/hands hips head shoulders even knees well basically every where!!(sorry)  I take oramorph on morphine patches pregabaline and i also self medicate consultant knows as does GP. I am in touch with Arran103 and carole51114 as they all say it does you good to come on this site and have a moan as we are all suffer pain just different stages. As i will tell any one do not do to much if possible little and often if it does not getdone today it will get done tomorrow(maybe)lol I am always in pain i have days when i cannot get out of bed some days when i am really down but i have learned to live with it (had long enough) never really get used to pain you learn to try and control it.  Try and keep on the move even if it is just moderate movement.when you get the tingling try heat for some ice packs work.If you know you are going to do something  take your pain killers before you do it it will help a little with the pain you just have to remember every one is different what works for one might not work for another  so you take care and look forward to your next post jeanette xx

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  • Posted

    Hi Guys, thanks for your replies. Sorry you are so badly affected. Carole I can empathise with having to give up the job you love. I was forced to leave my job in IT almost 3 years ago. I have other problems too "Ehlers-Danlos Syndrome", this is probably why I was affected so young as all my joints get much more wear and tear than normal as my ligaments and tendons are stretchy and allow too much joint movement. It also affects all connective tissues, ie: bowels, lung, heart valves etc...

    I think I have tried almost every kind of treatment out there, but nothing works for longer than 24 hrs. Up until last Nov I was virtually housebound as my mobility was so poor, but muscle relaxants (baclofen) have allowed me to regain mobility and stop the nasty spasms that were immobilising me. I've spent the summer out in the fresh air, and took on an allotment and got myself some chickens, that rely on me to see to them everyday. It has been the push I needed to get out and do it rather than dream about it. I'm just gutted that as I correct/mend one aspect of disability something else crops up to spoil it. I had heart surgery in July, I have problems with my autonomic nervous system, causing sweats, and attacks of intense heat and cold, dizziness upon standing, nausea etc... I have EDS, IBS, joint pain, TMJD, trigeminal neuralgia and Reflux all on top of the neck problems, so usually it's at the bottom of the list, but lately is pushing to the top.

    It's hard to juggle everything and still be me!

    I've been learning to pace myself for a long time now, although it's much easier in theory than in practice, and oh so hard to stop doing something when I have the energy and ability to do it. (those rare days lol)

    Arran I loved the "keep your chin up" comment, sadly that is not physically possible as it sends the lightning down my spine lol :D Thanks for all the suggestions and tips, My own tip is to wear a scarf or buff at all times (unless it's a red hot day) even for bed as I find it stop the draughts, that in my case set off the spasms (even hubby's breathing on me is enough to set it off) I believe it's kept a lot of symptoms at bay and kept me stable for a good long time now.

    I think the worst thing about chronic pain is what it does to my mental state. I started alienating myself from my family and friends and stopped going out, stopped socialising anywhere but online, but I have managed to get a lot better mentally this summer. The weather has a massive impact on how I feel both physically and mentally, so a good summer has worked wonders, along with higher doses of amitriptyline as it's an old fashioned kind of antidepressant. I thought the dosage level would keep the nerve pain at bay for longer as I was taking 20mg nightly previously. I use heat a lot, it works much better for me than ice, which just increases the spasms. I have heat pads, electric blankets, tens machine and I've trialed the "actipatch" which is surprising good, even if I can't understand how it works. I loved the chiropractor, but he ended up making it worse, so I daren't go again. Acupuncture worked, but only for 24 hrs and it gets expensive fast!

    I just hate that I seem to be getting worse and might have to bite the bullet and have the op, just to stop it getting worse, even if it doesn't help with the pain.

    I'm not usually much of a moaner, but knowing I have others to talk to who understand is a comfort. I hope I can be of comfort and support to you all as well.

    Thanks so much for listening smile

    Sarah

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    • Posted

      Hi Smoll

      Thanks for writing again.   I laughed about the bit "keep your chin up" too cos I can;t put my head back either.   I sleep sitting up with a bean bag teddy behind my neck for suport so my neck doesn't fall back which would give me pain big time.   Whatever you do don't stop going out if you can.  I hid away in the beginning feeling so sorry for myself.  I now go back to my dance class although I can only dance about once with my partner cos he knows the moves that won;t hurt me but at least I am in  company, getting dressed up, puting the make-up on to make me feel better wich gives me a boost.  Constant pain does affect you mentally and I do have really down days but am learning to get through them by concentrating on other things and thinking of people I know who are worse off than myself.   I tried chiropractor and now Bowens but neither seems to work.  I also use heat or ice, one after the other.   This does work if I persevere. especially the ice as it does reduce any swelling. I also use tennis balls to press on the really sore parts of ny neck or head.   It hurts like hell but pain eases off once you stop.  Chiropractor gve me this tip and it does work.   I now have two tennis balls tied up in one leg of a pair of tights and knotted into place and then lean back and press the tennis balls as hard as I can onto the sore parts of my neck or head.  Believe me it works.   Sound mad but I do get some releief from this.   Keep the tennis balls tied up on the headboard of my bed so they are there when I need them.   If anyone who doesn't know me saw me using them they would think I had flipped but when you are in that kind of pain you will do anything to help.  Also got tens machine which doesn't work for me but I do walk about at times covered in microwave heat pads (teddies, snakes, )anything that will fit into the parts of my body which has pain.  I have learned to laugh at myself (my partner too) as I hallucinate with morphine and say some stupid things.   I also fall asleep any time any place like in the middle of changing a programme with the remote control!   We have to laugh at ourselves at times.  It's better than crying.   At the moment no one will operate on me as it is too dangerous and I could end up totally paralised so can't go down that road.   Wish there was something like that which I could t at least try.  Take care.   Keep going out when you can and keep in company.   I know it's not always possible.   I spend days at a time in bed in agony and it takse me another few days to pulll myself together but I just try to enjoy the good days which are few and far between.   I really feel for you and understand how you feel.  It;s a horrible way to live but we have to keep going and do the best we can.   We have just got a litle puppy (get her Friday) as wee think me concentrating and focusing on something other than me and my pain will help me and looking forward to the cuddles.   Been told this breed (Cavtszu) is a very loving dog and everyone tells me I have done the right thing.   When I am too ill my partner will look after her.   It has given me a boost just thinking about it.  She won't grow very big which is good and we have a large garden for her.  It might also encourage me to walk with her as the only exercise I am alowed to do is walk and I tend not to do that as I hate walking on my own in case I get really sore and ill.   So I am off to buy some wellies this week in the hope this little bundle of fluff will help me to walk to the park which is only at the end of our road.Take care nd keep writing on  here,   It gives us all something to look forward to.   Havent' heard from Jeanette for  while but think she may be off on hols.

      Arran 103

      xx

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    • Posted

      Hopefully your little dog will help you as much as my chickens have helped me. It has been the tool I used to get me moving and interacting with people and life again. I was in serious danger of becoming one with my couch wink Walking is great exercise, walking with a dog is even better. But building an allotment and seeing life flourish under my hand is a real balm to the soul and has helped me pull my head out of my backside and make the best of a bad situation. I'm assuming a Cavtszu is cavallier king charles spaniel cross shitszu? If so it will be such a cutie and a lovely lap dog. maybe you can train it to lay around your shoulders and keep your neck warm :D

      Sarah

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    • Posted

      Hi Arran103

      Missed all your posts over the weekend as i have been away and just came back today(mon) been away for anniversary just in caravan and i can say did not do a lot (can"t anyway)but had a good w/end weather was good apart from friday night when the heavens opened but luckily was quite hot on sat/sun!!smile Granddaughter was 1 on wed.and went to the house could not move for people and kids!!! but had a good time only thing was she coming up wanting me to pick her up and like the dutifull nanna i did and paid for it so much pain on the night /during night and next day but was it worth it you bet it was!!!LOLmore morphime more pain killers/heat and anything else i could use.But i was ok to go away on fri.Did you get your little dog and what did you call her?Have you had her for a short walk yet and were you ok? I laughed too at keeping your chin up chance would be fine thing eh!!cant look up cant look down. I agree with about the heat when other granddaugher (3) comes and i have rabbitts/teddies/sheep warmed up she thinks i do it for her as well so it is the two of us sitting on the settee and chair with the heat packs on!!!   Well i have rambled on for too long(again) so you take care and i hope everything is ok with your little dog and keep on with the posts look forward to them jeanette xx

       

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    • Posted

      Hi Jeanette

      Glad your break away went well. Know the feeling about lifting the

      Grandchildren. My youngest is now 3 and he knows I can't lift him now but I still get kisses and he borrows my microwave teddy a lot. When I wear my patches he thinks I have fallen and hurt myself! Puppy arrives Friday. I feel like a child waiting for Xmas dAy. Her name is poppy . It's worse than preparing for a baby arriving with all we have had to buy! Got hospital

      Appointment tomorrow. Not looking forward to it. I have recently had two cancerous lumps removed from my foot and another has appeared so

      May have to have thAt removed asap. As though I don't have enough

      To contend with! Anyway pain been bearable lately. Don't think

      Bowens treatment is helping much. Got docs appointment Thursday.

      I am sure his face falls when I walk through the door as I am always

      Asking him if I can try something new. Got big dance on 18th so hope

      I am ok to go as I have my "ball gown". I will dance very little but will enjoy the company. My daughter is puppy sitting for us. Well that's all my news.Will keep in touch. Keep posting. It's good to hear from you nd keep as pain free as you can. Oh we have ordered adjustable bed. Hoping it helps

      Me feel better in mornings. Will let you know. Writing this on my kindle tablet - not as easy as laptop so excuse mistakes. Take care

      Carol xx

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    • Posted

      Hi Sarah

      Good to hear from you. You sound in good spirits. If your chickens can

      Help you then I'm sure my little dog Poppy will do the same. We get

      Her Friday and I'm really excited about it. Hoping she will want to cuddle in to me a lot but not sure about my neck lol! At least she will take up

      My time trying to train her and I may forget the pain. Got a busy week with hospital and doc appointments then Poppy so hoping my pain keeps

      At low level. Take care and keep in touch. No doubt I will have some

      Funny doggy stories to talk about soon instead of pain. Have as good

      A week as you can and don't "keep your chin up!"

      Carol xx

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    • Posted

      Hi Jeanette

      Just on for a moan! Bad day today! Did too much - hospital visit then

      Shopping and housework later. Ended lying in couch in agony.

      Ken gave me light massage then put patches on doped myself up

      With as many meds as possible and slept on and off on couch for rest of

      DAy and evening. Still so sore and the tears have been flowing.the rest

      Of the day. So looking forwArd to puppy but doubting I'll be able to look after her. It's a real

      Down dAy. Pain still unbearable and into my legs now.. just have to get

      Through this bad patch best I can until j feel better. Have to have another

      Bit removed from.foot as may be cancerous so have to look forward to

      Operation after 18th.. OK moan over! In bed now trying to find

      Comfortable way to sleep. Oh pain go away! Be in touch when feeling

      Better

      Carol xx

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  • Posted

    Hi sarah

    good to hear you are getting there it does take a while to stop that feeling of depression it took me a long while far too long really but i pulled my self out of it i still get down when i am really bad but i had 3 children to look after was also depressed because i could not work and that made me feel worse!! But they have turned out really good adults and work hard Oldest son has curveature off  the spine and had operation when he was 11/12 with steel rod but not a full one he is a joiner with his own buiseness that made me down for a while guilt is a strange thingsad well sorry to go on and pleased you have your chickens Mmmm nothing like fresh eggs hubby has  allotments with chickens/ducks/and a horse and whatever else he sees!!! so take care and hope to read your next post jeanette xxrolleyes

     

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