Does anyone get severe burning, crawling, tingling pain.
Posted , 5 users are following.
I was diagnosed with CS about 9 years ago after a trip on the stairs which
left me with neck and arm pain and bad headaches, at that time I was off
Sick from work for 11months. I had physio, medication etc but did
manage to get back to work. I was also diagnosed with secondary
Fibromyalgia.
Over the next 5years I managed my condition with regular Physio, I took up swimming. I was on 25mg of Amatriptyline at night and used codeine and paracetamol when my pain troubled me.
Then 2 years ago my mum was very ill and the stress flared up my pain,
I have pain in my head, face bones, neck, shoulders, between my
shoulderblades, sometimes radiating in to my arms and hands.Then
about 10 months ago I had a sciatica pain in my right legs went to a
Chiropractor with amazing results, I walked out with hardly any pain in my leg but she wouldn't touch my neck as there were too many
Contra indications..
A while later I started having hip pain and tripping over my own feet.
Then just when you think things can't get worse I have been suffering with
severe burning,crawling,tingling pain in my feet,ankles,calves,knees. When it gets severe it then spreads up into the rest of my body. It is always there.
I am on Amatriptyline 75mg at night,Tramadol, Paracetamol,Robaxin a
muscle relaxant and Oramorph but nothing seems to help,it just makes me drowsy. Oh yes I am also on Citalopram 40 mg as this constant pain
leaves me feeling very low and Depressed.
I had to stop driving 18 months ago as I was on Gabapentin then
Pregabalin and I have a constant fuzzy head with slow reactions and
didn't feel I was safe to drive.The side effects were too bad on those two meds so had to stop taking them.
I have hardly been able to go out anywhere because of pain, but now I am spending most of my time laying down as my pain increases if I'm on my
feet or sat up.I have an appointment at the Pain Clinic at the end of the
month but that seems a long long time when I am in so much pain.
I've made an appointment with my GP for Monday morning to see if he has any ideas of what I can try next.
I have a very supportive husband and family, without them I wouldn't be
able to go on.I am 57 but feel 107.
0 likes, 32 replies
Gerry_the_neck sheila1
Posted
Firstly, sorry and sympathies for your troubles. The symptoms you mention seem to indicate a trapped or compressed nerve. Where the leg symptoms are coincerned, those symptoms could be indicative of Radiculopathy, or Myleopathy, (both associated with cervical spondylosis), resulting from nerve issue in neck, or from nerve issue in lumbar area. An MRI of both areas might help to identify which area is responsible....your GP or Physio should be able to refer you for MRI, and , depending on the outcome, the treatments for neck, or for lumbar, would be different.
In the meantime, I would suggest that you assume it's all neck based, because of previous (ongoing) issues you've had, and maybe try altering your usual sleeping regime, to see if you can affect any change in your symptoms. Try sleeping, or just napping, on a sofa, in a semi-upright posture with good pillow support, for 2 or 3 days/nights, to see if the symptoms ease in any way. I don't think that constant medication, or increasing meds, is helpful in the long run, whereas a little self management might achieve surprising results, without the downside of having to worry about the negative effects of any medications. I know it might seem difficult to start changing your sleep comfort zone, but I've found it to be the best way to break the cycle of symptoms which seem to only icrease with repetitive 'bed sleeping' routines. In my opinion, might be worth a try...usually takes a few days to notice the effects, but once you realise it can make a difference, it gives you a sense of control over the symptoms which the meds simply do not offer.
Gerry
sheila1 Gerry_the_neck
Posted
Thank you for the support and advice, I will try your suggestions as I
would try anything at this stage.
I feel so bad today I wakened with burning all over, it's worse where my
limbs/ body is in contact with each other or bed/sofa etc, where heat is generated. I had a cool shower earlier and mixed aqueous cream with
Eucaliptous oil to try and cool the burning areas, this drained all my
energy, I just feel so ill, I feel sick all the time with medication so I don't want to eat.
But thank you again
Sheila.
donna22070 sheila1
Posted
I understand what you are going through im 53 and my mind feels 23 and my body feels 93!!! Its so damn frustrating. I have a very supportive family too and feel so sad for them when I am so unwell and they have to do more than they really should. I often feel like a burden and that gets me down. You certainly have been through a lot and still going through it. I know stress brings on flare ups for me too so it is incredibly important to keep the stress down but so damn hard to do that. I lost my mum and father in law nearly 3 years ago and then to top it all off we lost our eldest daughter 2 years ago she was 28, we now have our little 5 yr old grandson living with us and as much as I know he keeps my spirits up I also worry about how I will continue to look after him many days are a struggle. Our 19 year old daughter is an amazing help a real strength and support. Anyway I guess I didnt start out thinking I would talk about myself but it spilt out. I hope your GP can help with some pain relief until you visit the pain clinic. I too am on a range of drugs including diazepam which does help but is very addictive. I experience burning pain too and severe neck back shoulder and arm pain it is deep and aching as well as sharp and burning. I also have a lot of tingling and pins and needles in my hands and also it is in my my whole right side lately as well. Do you get dizziness and vertigo? I also get that too most days it is so debilitating. I am trying a new regime of sleeping to see if it helps my pain and dizziness. Gerry on here gives some great support and advice. I hope he sees your post. I am still trying to function as best I can I understand how much we need or want to just lay down and get some peace from the pain. It has helped me heaps finding this forum.
I really hope you get some help and have some improvement.
Good Luck and best wishes.
Donna xx
sheila1 donna22070
Posted
Thank you for your reply and yes I do get dizzy/ lightened at times, I
also feel sick quite a lot so my appetite is poor, I'm not worried about
that at the moment as I put on a stone in weight over the past year
while on Gabapentin and then Pregabalin.
Gerry did see my post and
he's given some good advice which I will try.
I am so sorry to hear you lost your Father in law then your Mum and
then your Daughter,
I can
only imagine how hard that must of been and still is. No one expects
their Child to die before themself. I have 5 beautiful grandchildren and
they make me smile and lift my spirits no matter how much pain I am
in. My Daughter and Son live about 3miles away, they visit as much as
they can and I get lots of gentle hugs. My Husband is amazing, he
works long shifts but on his days off always tries to take me out some
where, but the past few weeks my pain has reached a whole new level
so I haven't been anywhere.
It's so hard seeing them all suffering with my pain.
Thank you so much for your support, Just knowing there are people out there that do understand makes all the difference.
Sheila.
when I feel up to it
donna22070 sheila1
Posted
I understand what you are going through im 53 and my mind feels 23 and my body feels 93!!! Its so damn frustrating. I have a very supportive family too and feel so sad for them when I am so unwell and they have to do more than they really should. I often feel like a burden and that gets me down. You certainly have been through a lot and still going through it. I know stress brings on flare ups for me too so it is incredibly important to keep the stress down but so damn hard to do that. I lost my mum and father in law nearly 3 years ago and then to top it all off we lost our eldest daughter 2 years ago she was 28, we now have our little 5 yr old grandson living with us and as much as I know he keeps my spirits up I also worry about how I will continue to look after him many days are a struggle. Our 19 year old daughter is an amazing help a real strength and support. Anyway I guess I didnt start out thinking I would talk about myself but it spilt out. I hope your GP can help with some pain relief until you visit the pain clinic. I too am on a range of drugs including diazepam which does help but is very addictive. I experience burning pain too and severe neck back shoulder and arm pain it is deep and aching as well as sharp and burning. I also have a lot of tingling and pins and needles in my hands and also it is in my my whole right side lately as well. Do you get dizziness and vertigo? I also get that too most days it is so debilitating. I am trying a new regime of sleeping to see if it helps my pain and dizziness. Gerry on here gives some great support and advice. I hope he sees your post. I am still trying to function as best I can I understand how much we need or want to just lay down and get some peace from the pain. It has helped me heaps finding this forum.
I really hope you get some help and have some improvement.
Good Luck and best wishes.
Donna xx
pam26274 sheila1
Posted
Pam
sheila1 pam26274
Posted
Thank you for your reply.
I also only sleep on one pillow, My step son bought it for me last
Christmas, he researched and checked out all the reviews, he said this one came out the best and it made a difference, bless him.
I also use a pillow between my knees which does help but it warms up with my body heat and then I get my burning pain where my skin is in
contact with it. The same happens where my body is in contact with the bed/chair or another Limb.It is so hard to cope with it.
I do understand that we have to find coping strategies, My Husband
bought me a Kindle Fire HDX When it came out and it's been a Godsend, I have found lots of Relaxion apps and I listen to story's/dramas health
information on the radio stations which distracts me from my pain, I
also download interesting stuff to listen to in my own time, and
of course I go on line where I found this wonderful site and all you
fellow sufferers.It is also portable so I can use it anywhere.
I'm so sorry to hear about your pain Pam, I hope you continue to find
ways to cope/live with it. Thank you for your support it means a lot to me. Sheila.
pam26274 sheila1
Posted
Pam x
sheila1 pam26274
Posted
I feel I will end up in hospital as the toxic mix can't be good,
I do listen to relaxation music and radio it does help to distract from the
pain.I just hope I can get through the next few weeks but at the moment
I'm taking it a day at a time
Sheila x.
pam26274 sheila1
Posted
Pam x
sheila1
Posted
Here's an update.
I went to my GP this morning with great difficulty, It drained all
my energy just getting ready, trying to find light,loose clothing. Luckily the surgery
is about 2 miles away and my husband took me in the car, as soon as I sat in the
waiting room I started feeling nauseous with the Pain and my head was spinning
and everything went black, when I started to come out of it I was dripping in sweat.
My GP sat and listened to us while we updated him on my symptoms and pain.
He said he didn't really want to change my pain meds as it could make things
worse, the reason I had been referred to pain clinic is because they don't know
what to do with me as my pain is complex.he said I do have some neural pain.
He suggested I increase my Amitriptyline from 75 mg to 100 and take more
Oramorph when I need it and stick with the Tramadol, Paracetamol and Robaxin,
Citalopram and try and get through the next few weeks until my appointment at
Pain Clinic on 24th Nov. He also gave me some meds for the Nausea and Movicol
for bowels as Oramorph and Tramadol can cause Constipation.
So I am now on a bigger concoction of meds. Not Good.
Sheila.
Gerry_the_neck sheila1
Posted
If I were you, I'd be concerned about the variety of meds that your GP is prescribing. The differing meds don't always combine well, and can cause problems of their own. Just wondering if you have considered getting a second opinion from another GP....you are entitled to ask for this, or change your GP if there are any doubts. I can't understand how such an array of meds can achieve anything except further complications. Noirmally, the Oramorph alone should be sufficient to ease most pain.
sheila1 Gerry_the_neck
Posted
Thanks for getting back to me. I had to have my appointment today as it is the only day my husband was off work to take me, and the only GP I
could see was this one. I had been his patient for about 19 years then a
year ago I felt he really let me down and every one said the same as you
so I started seeing a female GP and got on really well with her, but she
left a
few months back. I then went to another Female GP and She was the one who referred me straight away to the Pain Consultant, she is away at the moment so I didn't have much choice.
jeanette43594 sheila1
Posted
I have been reading your posts and i am truly sorry you are having a really bad time.Gerry has been posting some good advice for you all i can say is have you tried to have a med holiday my pain managment consultant says to cut down on some for a day if you can and then when you take them again you can feel the benefit of them? I know it is asking a great deal of you when you are in so much pain.But still take some pain relief of course!! I am the same i am on that many pain you dont know wether you are coming or going!! I have a good husband too even though he is not well himself.I have tingling numbness and dizzyness also nauses have you tried accupuncture some times that does not work didnt for me but every one is different? I found the pain clinic was good as you also meet other people with pain and you find out the different ways they cope with it.I do hope you find some relief with your pain i have had constant pain for 49yrs (59) now a life time of it you do get down and you can go to a dark place because it does that to you i have been there but please try and keep positive.That is where this site comes in because if you are having a bad day you can post on here and someone will always reply to you.
You can have a good ramble or moan no one minds.
well i have rambled on for long enough and you take care hun
jeanette
donna22070 jeanette43594
Posted
I just read your post, I am so sorry you have been suffering with pain for most of your life. Can I ask did you have an accident or was it something you were born with and it progressed? I cant believe the amount of people who suffer so badly with CS, it is a cruel disease with such huge variations in symptoms. I get all the symptoms you mentioned but I was wondering about your dizziness as mine is very debilitating and sends me crazy along with the pain. What is your dizziness like? Mine feels like I am off balance, the room is moving, the bed is moving under me and I often suffer when I watch fast moving pictures on TV or movie. I also often feel like I am blacking out. Its just awful. I think your advice to Sheila about a holiday from some meds is a good one as we dont even know anymore which meds are helping and which ones are causing horrible side effects. I did try acupuncture but it actually worsened my symptoms, but as you say its different for everyone. You do get very down and depressed and some days I feel so fearful and worried about my family and life in general. BUT its so important to pull yourself up and look for positive things in our lives to be grateful for. I am actually feeling grateful for this forum lately.
Take care and Best wishes
Donna xx
donna22070 sheila1
Posted
You have been on my mind and heart recently, I am sorry you didnt get much help from the GP you are certainly in a lot of pain and your pill cocktail seems to be growing. I truly hope that you get some relief from the medication changes. All the meds can get you so confused with what and when to take the next thing, that out of control feeling is something I dont like. I read jeanettes post about a meds holiday which I think is a great idea but just dont know which ones to stop. I am sure the pain clinic will be a great help. I havent been to one yet but my doctor has told me I should. Im just soooo sick of doctors.
I hope you get some answers there.
Take care
Donna xx
Gerry_the_neck donna22070
Posted
Just a quick interuption here. I think your dizzy spells may well be what is commonly referred to as 'vertigo', and is common to C/S, with variable grades. The only way to identify cause is by means of MRI....Xrays etc just don't register vascular (artery) compression. I think it's worth just asking for an MRI for that issue alone, as it is known to create a vulnerability for strokes, which might be avoidable with treatment. The dizzyness is usually caused by compressed artery, which leads to less oxygen to the brain, and thus the dizzy/faint sensations. Mention this to your GP and I'm sure they will respond appropriately.
Gerry
sheila1 jeanette43594
Posted
Thank you for sharing your experiences with me.I slept so much better
last night and managed to go 12 hrs without any meds.My head feels
clearer today so I am going to try and reduce my meds a bit.
My Physio used to give me acupuncture, well he called it needle therapy,
I have been seeing him since 2007. He tried Manipulation, he tried
strapping to ease the pressure on my neck and the needle therapy mainly for the headaches.I found it helped a great deal and I was managing my
pain, but 2years ago it got to the stage that nothing helped and I felt it was aggravating it. He also gave me stretching exercises which I continue to do when able. My GP did refer me to a pain clinick about 20 month's ago
But the Clinic was in the City area and I lived out of that area so they couldn't refer me to the support groups or for any other treatments so went down the medication route. As I had been on 25 mg Amitriptyline since 2007
to help me sleep they decided to increase that, over the next two months I increased it up to 100mg a night but then it made me feel really ill and
couldn't function so dropped down to 75mg and felt ok and it did help.As
they could only keep me on the books for 6 months and over that time I
only had 4 appointments, On my final appointment I asked what they
would recommend in the future if my pain started breaking through again so they sent a letter to my GP advising to put me on Gabapentin or
Pregabalin. Well he put me on Gabapentin but I was like a zombie, the
side effects were really bad and I was still having to take pain relief,
mainly Codeine and paracetamol then ended up with
Oramorph as a rescue medication..In the end I went back to my GP and
asked him to refer me to hospital and I was in tears.He asked who did I
think could help, I said I'd seen a Rheumatologist back in 2006. He said
didn't feel that would help and to come back when I felt calmer and he
probably would refer me on but it would be to a psychologist/ psychiatrist, well that upset me even more and when I told my Family they were
fuming.
My daughter told me to make another appointment and She came with
me. She insisted he refer me, and at that time I had some Private health
insurance through work so we wanted to go private. So to cut a long
story short I saw a Rheumatologist 2wks later he orderd a MRI and
Refered me to his Colleague Pain Consultant.I was shown to have multi
level mid and lower cervical disc degenerative change predominantly
C4/5 and C5/6. Pain Consultant said it was Myofascial Pain Syndrome
with significant degree of Central Sensitization so he contacted GP and
advised to wean off Gabapentin and to start Pregabalin, he also referred
me to a Private Physio, but after a long talk she said I had a good
understanding of my problems and She knew my Physio and I was doing everything that she would advise.I never went back to my old GP again
until yesterday when I didn't have any choice. The Pain Consultant I am
booked to see is the one I saw Privately he told me at the time he also
does NHS work and would be happy to see me in the future. So I have to manage until then.
I think I've just about written a book. Sorry for rambling on, you have obviously gone through a lot and still are so my thoughts are with you also. Thank you so much for being there.
Sheila xx
sheila1 donna22070
Posted
I just read what you'd sent to Jeanette about the bed moving, I thought it was just me, it spooks me a bit. I get a lot of your symptoms especially
watching fast moving tv pictures etc, everything seems too loud and too
bright. Gerry has given you some good advice so you will have to let us
know what happens.
Best wishes Sheila x
sheila1 donna22070
Posted
because if it isn't you won't be able to get the full benefit. Read my reply to
Jeanette, I think that's what they call post code lottery.
I understand how you feel about doctors but there are some good ones out there, We just have to find them.
Sheila xx
jeanette43594 donna22070
Posted
I had curvature of the spine and I had a steel rod inserted from top of my neck to the
base of my spine so I am constantly ridged!But I have a beautiful posture lol😃!! When I go dizzy the room spins terrible I also feel
Sick even bending down sets me off I keep
Telling hubby the only other time I was dizzy
was when I was pregnant!!👀 I can be lying
in bed when it comes on. and I just hold on
to the bed it feels like I am going to fall out!!
I have vertigo tablets but I don't take them all the time .I have been down in a really dark place but I keep thinking always someone worse off then me.I know it does not feel like it when you are in pain but that is how I get
Through didn't always work but I am still
here and I have a good family and 2grand
daughters sons are doing well so I cant complain(but I do) well rambled on again lol so
you take care hun and any time you fancy a moan😊
jeanette43594 Gerry_the_neck
Posted
I take tablets for vertigo but don't do any thing for me still dizzy! But one can keep trying eh
sheila1 jeanette43594
Posted
I just read what you had written to Donna, That sounds like a
horrendous opp to go through, I wanted to ask with hindsight knowing
how it affected you, would you of still had the opp?.
And it's so true what you said there is always someone out there going
through worse Pain/Problems than ourselves so I need to stop
complaining.
Take Care
Sheila xx
sheila1
Posted
Sheilaxx
jeanette43594 sheila1
Posted
yes i would go through it again because in a way i am lucky because i was 1 of four to get it done in the country so i was a guinea pig.It basicaly trial and error!! I would be worse off if i did not have the operation as it was my choice even though i was only 10yrs old.My organs would be displaced and would not have a long life span.Dont stop complaining because thats one way to cope with pain. It never stopped me from been active when i was younger because i had freedom as i was in hospital for 4half/5yrs flat on my back for 2yrs.So i went mad climbing trees walking which i loved anything really always out and about.Never stopped me i had a full body cast on from chin to hips.Parents were worried sick lol Then i had what they call a brace on again a full body one.So yes i would have done again. I had the opp and i woke up in pain and i thought it would go as you do but it didnt and i have had ever since and it got worse
well there i go again rambling on.And i have been in a dark place more than once so dont stop complaining. beacuse there is nothing worse than pain. I went to pain clinic and i met some good friends and i still see them we talk put the world to rights lol they have different ailments 2 have RA one myself and 2 others have cs i have arthiritis as well as another lady and one has fybromyalgia.(right bunch) But good friends well you take care hun and hope to hear from you soon jeanette
donna22070 Gerry_the_neck
Posted
I am seeing another neurologist next thursday, I will certainly be mentioning my vertigo. I have thought about how often it is happening now and have also thought about the possibility of a stroke which is certainly something I could do without. It does scare me a lot. Thanks everyone for your replies and the support it has given me over the past days. Dont know how they can fix a compressed nerve except surgery
Anyway best wishes to all of you.
Donna xxx
sheila1 jeanette43594
Posted
Thank you for sharing your experiences with me, I can see you have Had
pain and frustrations for most of your life, but you are still able to give
help and support to myself and others.It's made such a difference to me.
I feel I can't be entirely truthful with my Family as it makes them suffer as well, so we have come to an arrangement , Its either a good day(can't remember when I last had one of them), or an ok day, or a bad day, so I no
longer go into detail as it brings us all down and I know that I am so fed
up hearing my self saying how bad I feel, so even though they say to talk
if it helps, I don't think it does anymore. That is why finding yourself and
all the wonderfully people on here willing to share experiences has been better than any medication I have tried.
I found a wonderful Quote on Facebook by Charles Darwin he says
"It is not the strongest of species that survives, nor the most intelligent
that survives, It is the one that is most adaptable to change".
This switched a light on for me and has given me more insparation,
So here's looking at a brighter future.
Take care and keep sharing.
Sheila xx
jeanette43594 sheila1
Posted
I hope that you will be able to tell your family as they are the people most closest to you who know you the best and who can help you when you are at your lowest ebb believe me when i say that because i was like that never said anything and just plodded on regardless.But please even if you just talk to your husband/partner and later your family they will be a great source of comfort to you even if it is just being ther for or to give you a simple thing like a cup of tea/coffee when you are down!! it does help to talk and if they didnt want you to talk they would not say it. It will not make them suffer it will help them to understand more of what you are going through it will bring you all closer because you do not want to push them away by not explaing what is going on with you and your body.Darwin may have said it but it takes time to adapt wether it be living with pain as our case or some other form of disabilty we even have to adapt to getting older. That is what thes sites are for for people like us to talk to other people in the same situation.I said to malcolm(hubby) what would i give for a day even without pain but this is who i am now and i cant change it.My GP was even talking about the only other choice would be to remove the rod which was a no no (i would fold like a pack of cards)lolhaha.been to long (49yrs) eurgh!! Every one has to help each other on here it is the way we cope for a while anyway.So please stay strong and talk to your family all of them
You take care hun and hope to hear from you soon xx(the future is always bright)xx
sheila1 jeanette43594
Posted
Reading your reply made me cry, maybe because I know that you are right and I am shutting them out, and because I feel your advice came from the heart.
I will try, sometimes you don't know what to do for the best, it's just so
hard sometimes.
If you did fold like a pack of cards you would be all Aces, as you help me so much.
I have been cutting down on the Tramadol and it made no difference to
my pain, but I can think better so that's good.
Thanks again
Sheila xxx
jeanette43594 sheila1
Posted
I am pleased to hear you can think better but sorry it made no difference to your pain.The clearer your head the better you feel even though you still have pain you can make decisions better about what you will say to your family. If it is easier write it down on paper when you are alone that helps you will soon find it just comes out what you want to tell them.My GP came to his senses about that!!lol You say it will make them suffer, it might make them suffer if you dont say anything because then it might feel as though you are excluding them and pushing them out!! It does come from the heart as i said i have been there and i remember what its like.
but not as much now you have to think it is a different way of living now and you cant do what you used to do. Remember it is not what you cant do it is what you can do a little bit at a time.
You will do what is right for you and your family.
You take care hun and hope to hear from you soon
jeanette xxx