Hello..anyone with a.s..don't knew much about... - Pain Concern

Pain Concern

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Hello..anyone with a.s..don't knew much about it..but sounds like I've got it..it starts in your upper back..

louiseamos profile image
32 Replies

Well mine did..physio sent me doctors..said need correct meds..treatment..very.very I'll this last 2 week..sweating badly..lots of pain all over at same time...doctors been so not nice..is this normal to feel this I'll?? I am very frightened.. was in bed all weekend..any one knew?? Doctor blaims morpie..I've been on 3 year now?! I've cut down 30 mg..just another 10 mg..then back to my morn..night..which need..been really in awfully pain..can't sleep..feel I letting my kids down..

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louiseamos profile image
louiseamos
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32 Replies
louiseamos profile image
louiseamos

Could chop my legs off!!!my neck still very sore..chest pain..

Reykua profile image
Reykua

Hi louiseamos,

It sounds awful. I hope you're feeling a bit better.

Sorry to sound so thick but I don't know what a.s. is. Could you please elaborate.

Is the sweating related to your reduction in morphine? I've had a similar experience that I can relate to when reducing my pain meds as well.

Wishing you better health and coping skills.

louiseamos profile image
louiseamos in reply toReykua

Hi. Reykua..name mentioned by caleolaria.sorry its me that's bit thick!! Ha never mind. have to laugh at my self sometimes..its not knewing what's wrong..could be morpie..but my own doctor told me take every two hour.god job never..I've took morpie for few year.only took l extra dose?? Thanks

louiseamos profile image
louiseamos in reply toReykua

Hi.reykua. so does morpie make you feel that I'll..could swear was feeling like that before cutting down..its dealing with pain that morpies been covering..don't help eh..I've got back to 30 mg in morn..20 at lunch.took just one yesterday but needed my night one Early.. so don't knew what to do..suffer pain?did you feel badly ???

Reykua profile image
Reykua in reply tolouiseamos

Yes, the meds really helped my pain but I experienced a lot of side effects like sweating and felt really ill with it. I also spent most of my time sleeping and it really affected my appetite.

If you're having palpitations as well or feel worse than you usually do, please go to a walk in centre or A & E as soon as you can - don't just hope it will go away.

Only proper tests and professional health staff will be able to tell you what it is and it's best for them to see you when you're actually experiencing these symptoms.

Wishing you better health.

louiseamos profile image
louiseamos in reply toReykua

Hi reykua..have been back doctors..waste my time..and there's by the way they make me feel...blood test came back normal.getting lot of waves of sweating..little electric shocks all over..I can feel it .its not in my head...dizzyness came first..now all this..can't sleep at all been up since 220 am...what can I do????!!! If its morpie..why has it took 3 year to feel this way..I look OK..but feel bad inside..doctors don't care..

Reykua profile image
Reykua in reply tolouiseamos

Would you mind telling me what conditions do you have and please do list all the medications you're taking. Are there any new meds or supplements you've recently started taking?

louiseamos profile image
louiseamos in reply toReykua

Reykua..started when 23.. after flu believe it...ribbsy very sore..couldn't breath in..though middle back..got very bad couldn't lie down hurt..doctors then didn't careless.. truned30.. got leg pain very bad..then lower back..can't stand in same place long..went spine care for few year..operation 4 hour in Feb 2011.. left worse..last year. After begging for scan..told operation needed..a big peace of disc come out sitting on my s 1 nerve..you knew took7 month to see a different back sep.. felt bit better..turned down my op.. then went physio..went 4 times he said my spines twisted..felt I'll really I'll..he sent me doc said no physio will help .I've a s ..can't spell..I take 30 mgmorpie mor.bed.20 mg at dinner..been on it 3 year..doctor said iI'd die??? I am getting sweat waves..followed by feeling cold.leg..feet killing..necks sore...get a feeling of sunburn in upper shoulders????? What you think???!! I am not going nuts...can't sleep...getting bad tummys too..doc don't care..blood came OK..so that's end that

louiseamos profile image
louiseamos in reply tolouiseamos

PS..reykua..been on these morpie meds 3 years..????!!????my brain feels ..like what's wrong with me...

Reykua profile image
Reykua in reply tolouiseamos

Unfortunately, you're going to have to go back to your GP. Some of your symptoms do sound like Fibromyalgia but you will need to be referred to a Rheumatologist for confirmation. Be assertive and request a referral as soon as possible.

If you want more information on symptoms of Fibro, go onto the Fibro Action site of HealthUnlocked (this site), all the information you want is there.

louiseamos profile image
louiseamos in reply toReykua

Reykua.. thanks..my cousion.. and her brothers have been told have me..she thought I had that..?? I am going back..will..shame no doctor were I live carers..feel ill.. never ever felt like this..sure bet 3 hour sleep won't help..get like a crawling feeling..had that couple year but been bad .since all this..so does fibro..make you ill like that

Reykua profile image
Reykua in reply tolouiseamos

Yes it really does. Before I was diagnosed, I was often unable to get out of bed on some days - the pain was terrible. I had all the symptoms you've described and didn't know what it was. Many people with Fibro have not been able to continue with work or study - depending on the severity and if they have any other conditions as well. Do request a referral to a Rheumatologist to make sure and check out the Fibro Action site.

Wishing you better health and coping skills.

louiseamos profile image
louiseamos in reply toReykua

Thanks reykua..really..been very sore.again today..feel ill too..am going gp so Tuesday.and demanding help..I can't sleep past 230 am..which isn't helping..thanks for all advice

maile1952 profile image
maile1952 in reply tolouiseamos

I had the same syntoms you had and my blood tests for Arthritis came out to be a 7 out of 14 so my GP said I did not have Fybromyalgia but my inflamation was a little high. I made my own appointment with an Rheumatoid Arthritis Specialest and it came to find out that I do have Fybromyalgia all over my body...

louiseamos profile image
louiseamos in reply tomaile1952

Maile 1952.. thank you too..I've felt very alone last few week..physio said one thing..doctor said its morpie..but knew its not..other family members have m. e.?? I knew I've arthritis in lower spine..but this really is worse I've felt so far in my life..pains full on all joints..neck.feet.legs..killing..its been 3 week since went physio and sent me doctor.had bloods..their fine?? They make you feel in your head..I can't eat..much..thanks..dizzyness has cut down..only thing as well..

louiseamos profile image
louiseamos in reply tomaile1952

Maile 1952.. can I ask how you made appment ..think that's what have to do..or never will get to end of things.. its not in my head xx

maile1952 profile image
maile1952 in reply tolouiseamos

I called the doctor's office myself and made my own appointment. It was easy. Find yourself a Rheumatoid Arthritis Specialist and call them. Good Luck.

maile1952 profile image
maile1952 in reply tomaile1952

The RA will take different blood test than your GP doctor, The tests is to see if you have Fibromyalgia or RA. If your inflamation level is high enough you may have RA if not you definately have Fibromyalgia.

maile1952 profile image
maile1952 in reply tolouiseamos

I also had to take a EMG/NCS test which my RA specialist sent me for because of tingling in my toes and the numbness in my arm, all on the left side. This testing is on the nerves. The testing came back negative and the Neurologist said that all my symptom's is because of my Arthritis., and that I did not have Neuropothy. I can't wait till my next appt. with the RA to see what the heck is going on...

louiseamos profile image
louiseamos in reply tomaile1952

Maile1952.. thank you so much for answering me..went doctor today has feeling no better..they not referring me has waiting for upper back scan first..I haven't slept in 3 week..I've no feeling in both big toed and 2 and 3 red in..new simptons..electric shocks up my elbows..all I want is to knew what's wrong...I knew have arthritis lower spine..but never been scanned anywhere else.. my ribbs killing.scared its lungs etc..if knew makes easyer... bless you xlooking now..

maile1952 profile image
maile1952 in reply tolouiseamos

I did not need a referral to make my appointment with the RA. If you know you have arthritis in your lower spine, that is good enough to go see a RA doctor on your own. You don't need to wait for your scan..Good luck.

louiseamos profile image
louiseamos in reply tomaile1952

Maile1952.. let me knew how get on good look..think my body's buggered .... getting oldnow knew what they meant 7 year ago when said I've back on 65 year old...

Calceolaria profile image
Calceolaria

Louise, do you mean ankylosing spondylitis? You need a rheumatology assessment to diagnose that. Don't diagnose yourself! I don't know the ages of your children but is it possible to sit together and try calmly to explain to them that you are doing your best but that you are currently in a lot of pain. You are trying to get the right treatment but it takes time. Can you ask them to help out with tasks? Kids worry when parents seem ill and sometimes react selfishly if they don't feel safe. You need to reassure them as best you can and let them you will do as much as you can for them but that you have limitations at the moment. You are not letting them down but you sound completely stressed and depending on their ages, they will have varying abilities as how to cope with that. Explaining might help.

louiseamos profile image
louiseamos in reply toCalceolaria

Calceolaira.. had bloods back today..didn't even bother to ring me..came normal??? That's that..rib pain been bad again .how do they diagnosis this?? Physio said could swear what's wrong

louiseamos profile image
louiseamos

Hi calceolaria.. hi its me..again..I've felt very..very..I'll..sweating comes in bad waves..in bed most time..feel ill.. if its morpie wouldn't of thought takeing one extra dose ?????get my blood back tomorrow.. well not actually back..haxx god kids got me huts..there all playing up..its not funny..if only someone knewxxh what is the blood test..I did ask nurse if was that what physio told them to do..had no MRI.or x ray.I've never ever felt so I'll...its scarey.. not eating much ..no temp.? My legs very sore..thinking worse things..x

Calceolaria profile image
Calceolaria

As Reykua advises, if you feel worse or your pain is different, get to a walk in centre or A and E. Best wishes.

I thought ankylosing spondylitis started in the lower spine/sacroiliac joints?

louiseamos profile image
louiseamos in reply to

Hi fruitycake23.. no starts in upper..chest ribb pain..believe me that's all I've read up on..23 I was when had ribb pain..can't breath..now in neck..think they tell by lower scan if fused together??

in reply tolouiseamos

Hi Louise,

Ankylosing Spondylitis typically affects the lower spine - the pain may be felt around the sacroiliacs and into the buttocks area and sometimes in your thighs. However it can affect the peripheral joints such as; the feet and/or hands.

Only a rheumatologist can diagnose inflammatory forms of arthritis, so you do need to ask for a referral.

All the best of luck!

louiseamos profile image
louiseamos in reply to

Hi crash doll.OK so went doctor today begging for help..been up since 1 am..every joint having shooting pains.feel going nuts..guess what they havent even sent me to see a rumotigist.....even though had letters from physio etc..said their waiting for me to go MRI scan...but it needs a rumo to go over it...can't take no more this time...he's give me gabpentin ..will

in reply tolouiseamos

I don't mean to pry but is their scope for you to pay for a private rheumatologist consultation?

louiseamos profile image
louiseamos in reply to

Crash doll..hi I've been on all sites.. if knew how I will pay to knew what's wrongwith.. it was march when phsyio sent me doctors saying something wrong..and need help..now end may almost had nothing !! Xno appment

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