Pain : Evening all am in so much pain with my... - Vasculitis UK

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Pain

Jayney7 profile image
16 Replies

Evening all am in so much pain with my shoulders n neck could cry nothing helping with the pain fed up isn't the word let hope I get some sleep xx

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Jayney7 profile image
Jayney7
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16 Replies
lesley2015 profile image
lesley2015

Hi Janyney,

If you are not adjusting any meds, have you tried a hot bath or a heat pad if you have one.

My knees, neck and shoulders were also really bad today (Cold weather defo doesnt help mine).

Bath may help you sleep a little better too.

Hope you get some sleep

Sima1952 profile image
Sima1952

Hello Jayney,

You have my sympathy. As Lesley has mentioned have you tried a hot/warm pad, hopefully it would work - my pain is in my lower back and left knee. l take 30/500 Co-Codamol x 8 in a 24hr period and so that l don't get confused - easily done with all the tabs. l'm on - l created a table to log when l have taken them.

What pain meds are you on?

Sally

Jayney7 profile image
Jayney7 in reply toSima1952

Hi lesley. And sima I use hot water bottles and meds are zapain diclofenac diazepan nefopam Gabapentin but still helping with pain I take diazepan to help me sleep which gave me 3hours am due back to see rheumatology tomorrow and hoping he gives me something that will help since June not had one day free from pain thanks for your comments love 2you both xx

linjoyfrench profile image
linjoyfrench

Hiya, self adhesive heat pads from Wilko attached to the inside of my top help. I have also bought a hand held shiatsu massager which does give relief. When walking around indoors, I try to remember to do shoulder rolls and then to clap hands in front and then behind back. Having had a frozen shoulder before I would say the worst thing would be not to move shoulders. Hope this helps

Jayney7 profile image
Jayney7

Hi thanks it not a frozen shoulder. Thay think could be something to do with positive p. Anca or something else am seeing rheumatology tomorrow second appinu. So hoping get some answers xx

linjoyfrench profile image
linjoyfrench in reply toJayney7

Neither is what I have now a frozen shoulder but I know from past experience what will happen if I don't keep moving.

Jayney7 profile image
Jayney7 in reply tolinjoyfrench

Yes I have to keep moving and on the go off to see rheumatology this so let's see if get some answers x

Jayney7 profile image
Jayney7

And used heat pads and dosnt really help xx

Hiya I have taken turmeric capsules for years and find the benefits very worthwhile. About 4 months ago I was speaking to one of my neighbours who is in severe pain with fibromyalgia and chronic pain syndrome and she was raving about golden paste ! It's turmeric with pepper and coconut oil,you can find the recipe online. She managed to come off her very strong pain killers . She freezes the paste in coffee bean trays and takes one every 4 to 5 hours . I have started doing this too and told my brother who has severe back pain due to a car accident. We have both found its brilliant for pain relief too. I'm sorry your in so much pain I hope you find relief soon.

Kind regards Diane

Jayney7 profile image
Jayney7

Ty Diane am back at hospital tomorrow hoping for some answers but will look in to what u taking am will to try any thing right know I'd love just one day with out pain and feeling so tired and down I try to do as much as I can still but feel it's getting harder each day xx

Suzym2u profile image
Suzym2uModeratorVasculitis UK

I am not sure if the page from the website may help but here is the link , hope the hospital were helpful. You could ask to be referred to the hospital pain clinic if they have one. vasculitis.org.uk/living-wi...

Jayney7 profile image
Jayney7 in reply toSuzym2u

Thank you suzym2u no the hospital are not helping as I throught would get answers but thay sending me for nother mri scan and X rays which had 3"months ago on my shoulder n spine just going round round xx

poppet2 profile image
poppet2

Hi. I too went through a period of Severe pain in shoulders and you have my deepest sympathy, lying down was agony. My rheumy gave me cortisone injections to help calm it ddown till Other meds kicked in. Hope you get some relief soon.

Jayney7 profile image
Jayney7 in reply topoppet2

Ty poppet 2 did thay ever find our what the lumps was mine keep coming and going but carnt hardly move my arms with it pain keeping me awake but doctors don't have a clue what it is sending my love xx

Cornette1 profile image
Cornette1

Have they checked your CK levels? I get rhabdomalyosis with my Vasculitis and this last time it affected my shoulders really bad. No pain killers helped. It's rare so they don't pick up on it off the top.

Jayney7 profile image
Jayney7 in reply toCornette1

Not what I know of had load of test done x ray not showing nothing xx

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