Aa
Quix
Hi hope your well.
I looked up the complex regional pain syndrome that you said to look at but this seems to be a pain linked to a injury like in a arm or leg then the pain spreads to inclued the whole arm or leg and is constant.
My pain is in bouts and only ever covers a small area of my body like the side of my hand or my rib area it comes as a very painfull nerve pain with a feeling of it cant be touched even light clothing will set it off it usually stays for between 3-5 days then passes.
I also get bouts of muscle spasms that last for the same amount of period although this bout was only two days long.
I have constant nerve pain in my ankle/arch of foot with loss of strength and cramping in it.
I have constant stabbing pains in my hips thighs and loss of sensation in them.
I have intermittant odd sensation i.e water running down my legs warm cold patches on my body.
And lot more.
I did come across this on my search have you heard of it i was wondering if it explained my hip/ nerve pain that goes under my left buttock and is agony sitting for any period of time as my whole bottom and thighs go to sleep. its called pirformis syndrome or do you just think its cause both my thigh muscles are in constant spasm that its pulling on my joints?
also i found central pain syndrome that reallly does match my symptoms.
I know you can only give your opinion which is so valued you have more medical background so can give a better view then most.
also do you know how lyrica works is it a slow buliding drug if i was to take a extra tablet lets say today would it work right away or take a few days of taking a extra tablet to see a difference?
Thanks
samantha
I looked up the complex regional pain syndrome that you said to look at but this seems to be a pain linked to a injury like in a arm or leg then the pain spreads to inclued the whole arm or leg and is constant.
My pain is in bouts and only ever covers a small area of my body like the side of my hand or my rib area it comes as a very painfull nerve pain with a feeling of it cant be touched even light clothing will set it off it usually stays for between 3-5 days then passes.
I also get bouts of muscle spasms that last for the same amount of period although this bout was only two days long.
I have constant nerve pain in my ankle/arch of foot with loss of strength and cramping in it.
I have constant stabbing pains in my hips thighs and loss of sensation in them.
I have intermittant odd sensation i.e water running down my legs warm cold patches on my body.
And lot more.
I did come across this on my search have you heard of it i was wondering if it explained my hip/ nerve pain that goes under my left buttock and is agony sitting for any period of time as my whole bottom and thighs go to sleep. its called pirformis syndrome or do you just think its cause both my thigh muscles are in constant spasm that its pulling on my joints?
also i found central pain syndrome that reallly does match my symptoms.
I know you can only give your opinion which is so valued you have more medical background so can give a better view then most.
also do you know how lyrica works is it a slow buliding drug if i was to take a extra tablet lets say today would it work right away or take a few days of taking a extra tablet to see a difference?
Thanks
samantha
Hi
Glad you did not have a emotional day, it must of been a shock the Dx and it must take time to get used to the idea of having MS no matter how much you might think you have it actually knowing you have it must have a huge impact on your life.
When i become friends with my friend i meet at my childs school i never knew she had MS she is so fit her diet is good and she keeps herself fit she is going back on meds though as i weakness and stomach problems are getting worse but she has had MS for nearly twenty years now so i have learnt it is a liveable disease, before that i thought it was a disablabling disease as i cared for people with MS and other condition but they were elderly people i had assumed all MS was the same but there are different stains stages and it does depend on the persons health diet and i guess what type they have.
You should do as much research as possible, thats why i just want to know what i have so i can get a plan in order to sort this out im the type of person who needs to know everything about what i have and how i can live a fullfield life still.
The key is to stay positive which you do anyway, iv been trying to do that all things are going wrong at the moment and its hard to stay positive and my mind keeps focusing on the results and what they might be!!
I just want to know and i pray when i go there will be a answer there for me and not i dont know what this could be and send me on my way!!
I pray this is not a relapes for you, when do you get your MS nurse? can you not ring up your consultant and talk about your worries with him/her?
It would be good to discuss your diet with the MS nurse as well.
Hope you stick to the diet sounds a challange good luck with that hun.
God Bless
Chat Soon.
Glad you did not have a emotional day, it must of been a shock the Dx and it must take time to get used to the idea of having MS no matter how much you might think you have it actually knowing you have it must have a huge impact on your life.
When i become friends with my friend i meet at my childs school i never knew she had MS she is so fit her diet is good and she keeps herself fit she is going back on meds though as i weakness and stomach problems are getting worse but she has had MS for nearly twenty years now so i have learnt it is a liveable disease, before that i thought it was a disablabling disease as i cared for people with MS and other condition but they were elderly people i had assumed all MS was the same but there are different stains stages and it does depend on the persons health diet and i guess what type they have.
You should do as much research as possible, thats why i just want to know what i have so i can get a plan in order to sort this out im the type of person who needs to know everything about what i have and how i can live a fullfield life still.
The key is to stay positive which you do anyway, iv been trying to do that all things are going wrong at the moment and its hard to stay positive and my mind keeps focusing on the results and what they might be!!
I just want to know and i pray when i go there will be a answer there for me and not i dont know what this could be and send me on my way!!
I pray this is not a relapes for you, when do you get your MS nurse? can you not ring up your consultant and talk about your worries with him/her?
It would be good to discuss your diet with the MS nurse as well.
Hope you stick to the diet sounds a challange good luck with that hun.
God Bless
Chat Soon.
Hello again!
Lovely to hear you had a good time in lego land! Even though you had to wait
such long time for each ride. I am sure it was worth going and to see the kids happy. You did something and that is what counts.
FIRST day today I did not cry since dx. My right arm started feeling very heavy (little painfull) and I thought that I was having a relapse (which I propably am having due to this unpleasant tingling). Anyways, I do not have ms nurse, who I could speak to at the moment. I called the surgery as was not sure if I needed to take myself to hospital and get some steoroids or something.
My gp very kindly called me back (bless her) she did say she can not help much as she is not s specialist but she did not think it was serious enough for me to go to hospital, as I can use the arm.
Want to go to work tomorrow and concentrate on it.
Well, time to do some research,... I have been reading up on the nutrition side of things (I am a firm believer that proper nutrition is healing,..). I am trying gluten free diet,... think it is going to be hard but will give it a go.
Glad you had a lovely day yesterday. Hope you have a good day tomorrow and dont forget I will keep my fingers crossed for 5th September.
Keep in touch, look forward to hearing from you.
Janey1
Lovely to hear you had a good time in lego land! Even though you had to wait
such long time for each ride. I am sure it was worth going and to see the kids happy. You did something and that is what counts.
FIRST day today I did not cry since dx. My right arm started feeling very heavy (little painfull) and I thought that I was having a relapse (which I propably am having due to this unpleasant tingling). Anyways, I do not have ms nurse, who I could speak to at the moment. I called the surgery as was not sure if I needed to take myself to hospital and get some steoroids or something.
My gp very kindly called me back (bless her) she did say she can not help much as she is not s specialist but she did not think it was serious enough for me to go to hospital, as I can use the arm.
Want to go to work tomorrow and concentrate on it.
Well, time to do some research,... I have been reading up on the nutrition side of things (I am a firm believer that proper nutrition is healing,..). I am trying gluten free diet,... think it is going to be hard but will give it a go.
Glad you had a lovely day yesterday. Hope you have a good day tomorrow and dont forget I will keep my fingers crossed for 5th September.
Keep in touch, look forward to hearing from you.
Janey1
Hi
Sorry you had a bad day yesterday amotion wise, sounds like your work seems very supportive with being able to go and see people and just talk and cry its all you need sometimes.
Lego Land oh my goodness!!! it was sooo busy people parking everywhere manic i tell you never again on a holiday time i will take the kids out of school and take them. Its a shame really as we had saved our tesco vouchers up for this 9 months of saving the queues were an hour to two hours each even the little rides were 30 mins for a two second ride ripoff brittian!!.
Besides this the kids had a nice time we were all together and the weather was great the picnic was lovely. I was slow going round and in agony but i did it!! i rested lots and because of that it took us till closing to get round the park lol im serious was there till 7pm
I let the kids go off with there Dad for most of it and just rested on the dgrass or a bench.
I did not feel well that night i was in pain and i felt so dizzy then all my left side went numb from my lips to my toes and i could not lift my arm but it has gone this morning and i am just tired and weak but it was all worth it really.
Went to the doctor on tuesday and she wont do any pain managment or PT till i get my results next wednesday which is a shame.She gave me some pain relieving gel for my muscle pain and some lax for my consipation, oh joy!! she also said i could go up on my lyrica but i dont want to do that unless i have to and apart from the muscle pain my nerve pain has not been to bad.
Hope your day at work today will be good today.
Take care hun.
Sorry you had a bad day yesterday amotion wise, sounds like your work seems very supportive with being able to go and see people and just talk and cry its all you need sometimes.
Lego Land oh my goodness!!! it was sooo busy people parking everywhere manic i tell you never again on a holiday time i will take the kids out of school and take them. Its a shame really as we had saved our tesco vouchers up for this 9 months of saving the queues were an hour to two hours each even the little rides were 30 mins for a two second ride ripoff brittian!!.
Besides this the kids had a nice time we were all together and the weather was great the picnic was lovely. I was slow going round and in agony but i did it!! i rested lots and because of that it took us till closing to get round the park lol im serious was there till 7pm
I let the kids go off with there Dad for most of it and just rested on the dgrass or a bench.
I did not feel well that night i was in pain and i felt so dizzy then all my left side went numb from my lips to my toes and i could not lift my arm but it has gone this morning and i am just tired and weak but it was all worth it really.
Went to the doctor on tuesday and she wont do any pain managment or PT till i get my results next wednesday which is a shame.She gave me some pain relieving gel for my muscle pain and some lax for my consipation, oh joy!! she also said i could go up on my lyrica but i dont want to do that unless i have to and apart from the muscle pain my nerve pain has not been to bad.
Hope your day at work today will be good today.
Take care hun.
Hello there,
Thank you for your message. Gosh, it sounds you are really trying,... go for it, do any exercise and streching you can. Sounds your friend is very sensible in trying to keep fit. She is definitely a motivation for me. I have had a bad start of the day and just broke down in tears at work so went to see our occupational nurse, who was able to see me straight away and just let me cry. It helped a great deal. I then cried on the way back from work in the car (as I usually do after dx) but FEELING MUCH BETTER NOW. So looking forward to having a good rest and having a good (or at least better) day tomorrow.
Now tell me, how was your day in lego land? You had a beautiful day for it,... did you manage to do some walking? Hope your body was not playing up too much today and you managed to enjoy yourself.
Definitely well done on the step machine,... I am hoping to go swiming, it is just this tingling that is driving me insane, even though I am trying to ignore it.
Looking forward to hearing from you soon. Take care for now.
Janey1
Thank you for your message. Gosh, it sounds you are really trying,... go for it, do any exercise and streching you can. Sounds your friend is very sensible in trying to keep fit. She is definitely a motivation for me. I have had a bad start of the day and just broke down in tears at work so went to see our occupational nurse, who was able to see me straight away and just let me cry. It helped a great deal. I then cried on the way back from work in the car (as I usually do after dx) but FEELING MUCH BETTER NOW. So looking forward to having a good rest and having a good (or at least better) day tomorrow.
Now tell me, how was your day in lego land? You had a beautiful day for it,... did you manage to do some walking? Hope your body was not playing up too much today and you managed to enjoy yourself.
Definitely well done on the step machine,... I am hoping to go swiming, it is just this tingling that is driving me insane, even though I am trying to ignore it.
Looking forward to hearing from you soon. Take care for now.
Janey1
Hi
Great to hear from you.
Those dark moments are not nice and sometimes crying helps realease all that tention and worry and helps you get focused again.
I think the nerves do repair themself sometimes and thats why in Ms sx seem to come and go.
I think getting treatment early is ment to be helpfull but i dont know enough to really comment on that.
My friend was put on the one you inject not sure if it began with a b or a i (not very helpfull am i) but she injected into her tummy and thigh everyday she comes off it every pregnancy she had but since her last baby (who is two now) she is going to go back on them, after her second baby was worst and she was in a whhelchair but has come back from that had a third child runs nearly everyday and is ok fairly.
MS has effected her sight (not badly) her stomach (very bad she is hoping not for a op but has a blockage in her intestine) and her body is numb in most places below her waist but she is so fit you would never guess she has MS.I think the key to helping through this is meds and being phyically fit thats what she swears by and it sounds to me you are fit.
I used to run 5 miles a day for a year before i came down with hip and knee pain due to muscle weakness and spasitity in my thigh muscle PT helped but i never went back to running i tried a exercise bike just before i got ill but have not been on it since.
When on not to bad i do my stretching exercises and have a low inpact step macine i put it on no resistence at all and have been using that i can do 500 steps before i get pain it used to be 50 so i have improved no end i can only use that on days i am feeling ok.
Took my kids to the park yesterday with my husband and was in agony by the end still in pain today its the tight band i have around my left leg and hip that prevents me from walking and my left foot nerve pain, my leg goes numb and i get stabbing pains then the thigh muscle goes into spasms and i have to sit down!! Still determind to walk round lego land though and not in a wheelchair or use a stick stubborn moo i am lol
Take care and look forward to hearing from you again.
God Bless
Great to hear from you.
Those dark moments are not nice and sometimes crying helps realease all that tention and worry and helps you get focused again.
I think the nerves do repair themself sometimes and thats why in Ms sx seem to come and go.
I think getting treatment early is ment to be helpfull but i dont know enough to really comment on that.
My friend was put on the one you inject not sure if it began with a b or a i (not very helpfull am i) but she injected into her tummy and thigh everyday she comes off it every pregnancy she had but since her last baby (who is two now) she is going to go back on them, after her second baby was worst and she was in a whhelchair but has come back from that had a third child runs nearly everyday and is ok fairly.
MS has effected her sight (not badly) her stomach (very bad she is hoping not for a op but has a blockage in her intestine) and her body is numb in most places below her waist but she is so fit you would never guess she has MS.I think the key to helping through this is meds and being phyically fit thats what she swears by and it sounds to me you are fit.
I used to run 5 miles a day for a year before i came down with hip and knee pain due to muscle weakness and spasitity in my thigh muscle PT helped but i never went back to running i tried a exercise bike just before i got ill but have not been on it since.
When on not to bad i do my stretching exercises and have a low inpact step macine i put it on no resistence at all and have been using that i can do 500 steps before i get pain it used to be 50 so i have improved no end i can only use that on days i am feeling ok.
Took my kids to the park yesterday with my husband and was in agony by the end still in pain today its the tight band i have around my left leg and hip that prevents me from walking and my left foot nerve pain, my leg goes numb and i get stabbing pains then the thigh muscle goes into spasms and i have to sit down!! Still determind to walk round lego land though and not in a wheelchair or use a stick stubborn moo i am lol
Take care and look forward to hearing from you again.
God Bless
Hello Sam,
Thank you for your message. No worries re mistakes, I make a lot of them and having to check all the worky e-mails I send all the time.
It seems like you are in a lot of pain you poor thing! I do hope you manage to find yourself a decent pain managment clinic that will help you.
Yes, I feel crying helps me a lot at the moment to get through any dark thoughts. I think it is worst at work as since I was dignosed it has prevented me from concentrating on my work, even though I enjoy it. When I get my gabapentin and it starts working I am determined to go back to the gym. I ahve been exercising and streching at home, I do think it helps mentally and physically.
Muscle spasms do not sound very nice,... I actually failed an exam this summer, when I was writing my right forearm felt as if it wanted to go into a spasm but never went. It resulted in my writing being completely ilegible and I believe that could have been main reason for my failure. Shame, but live goes on.
Your friend is lucky she recovers from her attacks. Do you know if she is on interferons?
I have been feeling this tingling for about 2-3 months now and strongly hoping my body will try to repair the damage that has already been already done.
When I go to see my med consultant I will press with interferons, at the moment it sounds like the only option to lessen the occurence of further lessions. I have also been reading a bit on the vaccine they are developing,.. they are on their second round of testing and it sounds great. It was successful in the first round of testing and they were saying it may be available within 2-3 years if further success. I pray every day for this to be available soon,...
Hope you have a great Wednesday, enjoy it,... and well done for wanting to walk,... it strenthens your muscles, I believe it is good for you (obviously if you are not in too much discomfort through pain). Let me know how you did.
Take care for now and looking forward to hearing from you soon.
Janey1x
Thank you for your message. No worries re mistakes, I make a lot of them and having to check all the worky e-mails I send all the time.
It seems like you are in a lot of pain you poor thing! I do hope you manage to find yourself a decent pain managment clinic that will help you.
Yes, I feel crying helps me a lot at the moment to get through any dark thoughts. I think it is worst at work as since I was dignosed it has prevented me from concentrating on my work, even though I enjoy it. When I get my gabapentin and it starts working I am determined to go back to the gym. I ahve been exercising and streching at home, I do think it helps mentally and physically.
Muscle spasms do not sound very nice,... I actually failed an exam this summer, when I was writing my right forearm felt as if it wanted to go into a spasm but never went. It resulted in my writing being completely ilegible and I believe that could have been main reason for my failure. Shame, but live goes on.
Your friend is lucky she recovers from her attacks. Do you know if she is on interferons?
I have been feeling this tingling for about 2-3 months now and strongly hoping my body will try to repair the damage that has already been already done.
When I go to see my med consultant I will press with interferons, at the moment it sounds like the only option to lessen the occurence of further lessions. I have also been reading a bit on the vaccine they are developing,.. they are on their second round of testing and it sounds great. It was successful in the first round of testing and they were saying it may be available within 2-3 years if further success. I pray every day for this to be available soon,...
Hope you have a great Wednesday, enjoy it,... and well done for wanting to walk,... it strenthens your muscles, I believe it is good for you (obviously if you are not in too much discomfort through pain). Let me know how you did.
Take care for now and looking forward to hearing from you soon.
Janey1x
Hope you understood my post repeated myself alot and lots of spelling mistakes sorry a real brain fog day today and my hands just wont hit the right keys today!! Hope you can pick round the old stuff and the spelling mistakes hun.
Sam x
Sam x
Hi janey,
Great to hear from you again. Im sorry you still are having problems with tingling but its sounds like these meds will sor that out thats what my lyrica does simular it interfers with the neurons and transmitters (like i know what that is!! but thats how the doctor explained it.) Prob got all the spelling wrong on that lol.
Im going back to my doctor next week and im going to try and get some PT or a referal to a pain management clinic if she will allow me she really wants to wait for the MRI but i have so many phyiscal things building up thats stopping me from moving on i think if i could stop my thigh muscles from spasms it would not pull on my hips and hurt the joints which i am sure is going on and as these things take for ever with the NHS i thought it would be good to start now.
I understand the crying thing i cry alot lately just wehat ting to know what is wrong not knowing what sx will come next and wanting my old life back!
We are ment to be going to lego land on wednesday and my husband wants to get me a mobility scooter!! but i said no way i want to walk round at snail pace lol its unfair really im32 not 82 but i can only pray it will get better im not on a stick or crutches now so i have alot to be thankfull for.
My friend who has MS was dx at twenty has had three boys with some relapes after but always recovered so there is great hope for you having a baby just go over it with your consultant.
Praying for you
Sam x
Great to hear from you again. Im sorry you still are having problems with tingling but its sounds like these meds will sor that out thats what my lyrica does simular it interfers with the neurons and transmitters (like i know what that is!! but thats how the doctor explained it.) Prob got all the spelling wrong on that lol.
Im going back to my doctor next week and im going to try and get some PT or a referal to a pain management clinic if she will allow me she really wants to wait for the MRI but i have so many phyiscal things building up thats stopping me from moving on i think if i could stop my thigh muscles from spasms it would not pull on my hips and hurt the joints which i am sure is going on and as these things take for ever with the NHS i thought it would be good to start now.
I understand the crying thing i cry alot lately just wehat ting to know what is wrong not knowing what sx will come next and wanting my old life back!
We are ment to be going to lego land on wednesday and my husband wants to get me a mobility scooter!! but i said no way i want to walk round at snail pace lol its unfair really im32 not 82 but i can only pray it will get better im not on a stick or crutches now so i have alot to be thankfull for.
My friend who has MS was dx at twenty has had three boys with some relapes after but always recovered so there is great hope for you having a baby just go over it with your consultant.
Praying for you
Sam x
Hello there,...
I think my symptoms startedabout 2 years ago when I went to my osteopath and he said I had a 'sticky bone' somewhere around my pelvis, I thought I damaged somehing while exercising. I went to Italy for few days and my hip was quite painful for about week (with some numbness around groing area,... which dissapeared within about 2 weeks). Doc dismissed this completedly and said thereis nothing wrong as there is some sensation and gave me meds for shingles (would you believe this?...).
Anyways, about last August (2006) I experienced very mild problems with my balance and pwent to see physio at the gym who thought it was trapped nerve. She pressed on the spine a bit and all symptoms dissapeared within a couple of days.
January 07 - strange sensation when I flexed ny neck (bent down) , this geve me 'pulling' sensation from feet up, which was completely painless. I also had an episode of 2 weeks when my legs went numb from knee down, also dissapeared completely.
Since then I experienced very slight leg weakness and on occassion slightly 'heavy' feeling in my forearms. I do not have problems with my balance and hope it will remain that way.
I have had 2 mri's and vep (which was negative). First mri of my lower spine was completely clear but second mri of my brain and upper spine showed some lessions on brain and upper spine.
THe consultant said she does not think I should go on interferons as in her opinion it is relapse remitting. I hope and pray she is correct. I expericned quite a bit of tingling onregular basis (which is just a bit annoying and also an unplasant reminder of ms).
To combat the tingling I am picking up my meds on this Tuesday coming (I think it is Gabapentin, which I believe is quite versatile and effective med and should sort of correct the messages interpretted by the nerves,... sorry this is not very technichal but that is what the doc said ).
I do sometimes experience very mild shakes in my hands (only in certain position, not when I strech my art out), which always upsets me, as I play piano. It does not however cause any problems when I type (thanks god for that as I need my hands to type at work being an accountant). It sounds you are in a bit of pain there,... I though all that I was experiencing in the last few months was some sort of temporary parasthesia,... unfortunately it was not the case
I will be seeing a consultant (in the next couple of months)about meds and I think I will press him to prescripbe interferons. Oh, there is also the baby question,... we so wanted at least one,... so will see what they say. At the moment I want to know only what I need to know,... it is still all so fresh and I still have a cry every day and fear the future.
Sorry this is so long,will be thinking of you on 5th Sept and looking forward to hearing from you.
Take care for now.
Janey1
I think my symptoms startedabout 2 years ago when I went to my osteopath and he said I had a 'sticky bone' somewhere around my pelvis, I thought I damaged somehing while exercising. I went to Italy for few days and my hip was quite painful for about week (with some numbness around groing area,... which dissapeared within about 2 weeks). Doc dismissed this completedly and said thereis nothing wrong as there is some sensation and gave me meds for shingles (would you believe this?...).
Anyways, about last August (2006) I experienced very mild problems with my balance and pwent to see physio at the gym who thought it was trapped nerve. She pressed on the spine a bit and all symptoms dissapeared within a couple of days.
January 07 - strange sensation when I flexed ny neck (bent down) , this geve me 'pulling' sensation from feet up, which was completely painless. I also had an episode of 2 weeks when my legs went numb from knee down, also dissapeared completely.
Since then I experienced very slight leg weakness and on occassion slightly 'heavy' feeling in my forearms. I do not have problems with my balance and hope it will remain that way.
I have had 2 mri's and vep (which was negative). First mri of my lower spine was completely clear but second mri of my brain and upper spine showed some lessions on brain and upper spine.
THe consultant said she does not think I should go on interferons as in her opinion it is relapse remitting. I hope and pray she is correct. I expericned quite a bit of tingling onregular basis (which is just a bit annoying and also an unplasant reminder of ms).
To combat the tingling I am picking up my meds on this Tuesday coming (I think it is Gabapentin, which I believe is quite versatile and effective med and should sort of correct the messages interpretted by the nerves,... sorry this is not very technichal but that is what the doc said ).
I do sometimes experience very mild shakes in my hands (only in certain position, not when I strech my art out), which always upsets me, as I play piano. It does not however cause any problems when I type (thanks god for that as I need my hands to type at work being an accountant). It sounds you are in a bit of pain there,... I though all that I was experiencing in the last few months was some sort of temporary parasthesia,... unfortunately it was not the case
I will be seeing a consultant (in the next couple of months)about meds and I think I will press him to prescripbe interferons. Oh, there is also the baby question,... we so wanted at least one,... so will see what they say. At the moment I want to know only what I need to know,... it is still all so fresh and I still have a cry every day and fear the future.
Sorry this is so long,will be thinking of you on 5th Sept and looking forward to hearing from you.
Take care for now.
Janey1
Hi
Yes they do have pain management clinics in the UK i guess my doctor can refer me but i think my doctor is just waiting for a Dx first before they do anything. I had thought of asking her for PT as i had it once two years ago for muscle weakness in my thinghs causing knee pain.
The pain goes around my hip (which gets numb and has stabbing pains in it) to around my left buttock and deep inside the bottom of the left thigh almost where the buttock joins the top of the leg i aso get sharp stinging pain in my buttocks on walking and sitting it gets tighter and tighter as the day goes on and it hurts when i walk and sit. My whole back thighs and front and hips go numb on sitting and lying on my back and sometimes walking i can still use the leg but it feels like someone has injected me with a local anaesthetic if that makes sence.
If it is central pain syndrome will that show on the MRI and if not will the neuro be able to dx that is central pain syndrome different from MS or a cause of it?
Also iv also thought maybe its fibro? but it would not explain the memory probs and word recall and balance or would it? is fibro simular to MS?
Sorry lots of questions and your already snowed under!!
Im going back to the doctor next week i think i will talk to her about pain managment and PT but she does seem to want to wait till the MRI results and i cant talk to my consultant between appointments he gets very stressed about that as he is so over loaded already it has to be a emergency!! so my doctor is my only contact.
How have you been lately well i hope?
So pleased your still around
Take Care
Yes they do have pain management clinics in the UK i guess my doctor can refer me but i think my doctor is just waiting for a Dx first before they do anything. I had thought of asking her for PT as i had it once two years ago for muscle weakness in my thinghs causing knee pain.
The pain goes around my hip (which gets numb and has stabbing pains in it) to around my left buttock and deep inside the bottom of the left thigh almost where the buttock joins the top of the leg i aso get sharp stinging pain in my buttocks on walking and sitting it gets tighter and tighter as the day goes on and it hurts when i walk and sit. My whole back thighs and front and hips go numb on sitting and lying on my back and sometimes walking i can still use the leg but it feels like someone has injected me with a local anaesthetic if that makes sence.
If it is central pain syndrome will that show on the MRI and if not will the neuro be able to dx that is central pain syndrome different from MS or a cause of it?
Also iv also thought maybe its fibro? but it would not explain the memory probs and word recall and balance or would it? is fibro simular to MS?
Sorry lots of questions and your already snowed under!!
Im going back to the doctor next week i think i will talk to her about pain managment and PT but she does seem to want to wait till the MRI results and i cant talk to my consultant between appointments he gets very stressed about that as he is so over loaded already it has to be a emergency!! so my doctor is my only contact.
How have you been lately well i hope?
So pleased your still around
Take Care
Hi, Samantha, About the regional pain syndrome. I agree that if your areas of pain move around, it doesn't sound like CRPS. But, I have wondered also about the Central Pain Syndrome, too. I bring it up, because it takes more com;ex pain therapy to treat it and I've been afraid you were not getting the kind of pain treatment you need. Does the UK have Pain Manangment Clinics? Are they available in the NHS?
When you discuss the pain that goes under (below or under the buttock muscle) the buttock - does it go deeply down the back of your thigh? If so, this sound more like sciatic pain. I have spasm in my pyriformis muscle on the right and it hurts high in the buttock toward the center and then out to the hip. There are some good stretches that I do to keep the pain down. I can't tell what it is that you have, because spasm pulling on a joint can also cause pain. Can you get a referral to physical therapy?
Quix
When you discuss the pain that goes under (below or under the buttock muscle) the buttock - does it go deeply down the back of your thigh? If so, this sound more like sciatic pain. I have spasm in my pyriformis muscle on the right and it hurts high in the buttock toward the center and then out to the hip. There are some good stretches that I do to keep the pain down. I can't tell what it is that you have, because spasm pulling on a joint can also cause pain. Can you get a referral to physical therapy?
Quix
Hi
Its great to talk to another UK resident and the same age!
Im not dx yet had my MRI on the 15th of August and am waiting results i dont get them till the 5th of september so am so nervous waiting!! they were looking for inflammation of the central nervous system and thats all i know.
I wish i knew what caused the water type running down the legs and the other sensations that i get i know there is a word for these but im not sure what it is but its all neuropathic sesations/pain its to do with the mesages from the nerves getting confused either in the brain or the spine somewhere and sending off faulse messages.
Quix would be better answering this im useless!!
I really wanted her to look at my posting and give me a answer but i also know how busy she is on here and how many she has to answer she truely is amazing!!
My testing i guess from the date i saw the consultant till i go back to him will be 5 months but iv only been really bad for 3 months and off sick still.
Im on lyrica 375mg a day its not ideal as iv read its addictive and its not for evewrybody cause of its side effects but its been great for me controlling the nerve pain but it does not really help witht he muscle pain though.
Good luck picking up your meds let me know how you get on with them.
I pray your be able to carry on work as long as you can.
What are your present sx at the moment? are they starting to hinder your work? and why did the dc only think you had one attack?
God Bless and look forward to reading your reply.
Its great to talk to another UK resident and the same age!
Im not dx yet had my MRI on the 15th of August and am waiting results i dont get them till the 5th of september so am so nervous waiting!! they were looking for inflammation of the central nervous system and thats all i know.
I wish i knew what caused the water type running down the legs and the other sensations that i get i know there is a word for these but im not sure what it is but its all neuropathic sesations/pain its to do with the mesages from the nerves getting confused either in the brain or the spine somewhere and sending off faulse messages.
Quix would be better answering this im useless!!
I really wanted her to look at my posting and give me a answer but i also know how busy she is on here and how many she has to answer she truely is amazing!!
My testing i guess from the date i saw the consultant till i go back to him will be 5 months but iv only been really bad for 3 months and off sick still.
Im on lyrica 375mg a day its not ideal as iv read its addictive and its not for evewrybody cause of its side effects but its been great for me controlling the nerve pain but it does not really help witht he muscle pain though.
Good luck picking up your meds let me know how you get on with them.
I pray your be able to carry on work as long as you can.
What are your present sx at the moment? are they starting to hinder your work? and why did the dc only think you had one attack?
God Bless and look forward to reading your reply.
Hello,
I am also 32 year old female (uk too). No children and diagnosis delivered on 15th August. I am sorry you seem to be experiencing a lot of different symptoms, are you actually dignosed?
If yes, how long ago were you dignosed?
All my tests took appboximately 3-4 months so there was not that much waiting, neverthless they left left me a bif of a nervous wreck, as I am trying to get my left back as much as I can. I work full time and really worried how long I will be able to do this for.
I am interested in the syndrome you described, where you have intermittant 'water running' sensation in your legs and cold patches on your body. This is something I am also suffering from, whenever I walk anywhere (does not have to be very far) or do a slight exercise, there it is,... 'water running' sensation in my legs, which makes me feel a bit weaker. Have you got an idea or have you tried to find out before what might be causing it?
Are you on any meds? My doc says it coulcd be classic tingling and I should be picking up my meds next Turesday, as at the moment they onlywant to treat my symptoms, not the actual illness, as they dont seem to think I had two actute attacks (which I think I did).
Looking forward to hearing from you.
Janey1
I am also 32 year old female (uk too). No children and diagnosis delivered on 15th August. I am sorry you seem to be experiencing a lot of different symptoms, are you actually dignosed?
If yes, how long ago were you dignosed?
All my tests took appboximately 3-4 months so there was not that much waiting, neverthless they left left me a bif of a nervous wreck, as I am trying to get my left back as much as I can. I work full time and really worried how long I will be able to do this for.
I am interested in the syndrome you described, where you have intermittant 'water running' sensation in your legs and cold patches on your body. This is something I am also suffering from, whenever I walk anywhere (does not have to be very far) or do a slight exercise, there it is,... 'water running' sensation in my legs, which makes me feel a bit weaker. Have you got an idea or have you tried to find out before what might be causing it?
Are you on any meds? My doc says it coulcd be classic tingling and I should be picking up my meds next Turesday, as at the moment they onlywant to treat my symptoms, not the actual illness, as they dont seem to think I had two actute attacks (which I think I did).
Looking forward to hearing from you.
Janey1
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
