Explaining to others your symptoms

AusJen

Hi, I'm trying to explain some of my symptoms to my family.

They understand the creaky grating noises, they understand the permanent dull ache but I'm really trying to explain what spinal spasms feel like. They restrict my movement with intense pain, but to even push through the pain, say to go from standing to sitting. Its almost like it paralyse me . How do you explain it to people.

Also the exhaustion? I wake up ok, I'm knackered my walking round the block or doing a few chores. How can I go from doing Everything for the family and fully active, to being tired from 5to10mins of pottering about?

stickywicket

Hi AusJen,

I was hoping someone with spinal problems would answer this but the irony is that my arthritis is virtually everywhere except my spine. I did have a spinal problem once - not arthritis - and only time and exercises sorted it. However, Whatever our form of arthritis and wherever it is, we do all have some things in common and lack of understanding by those around us is one.

I think I can help with the fatigue problem. Try reading, and getting your family to read, The Spoon Theory. It explains things very well. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. maybe take one of them to your next appointment so that the doc can explain.

The first time I went into hospital my sons were not quite into double figures. When I got out my husband had a timetable of household chores up on the fridge. They took their turns. I think it was good for them.

Backs are tricky things so I'd suggest you get a physio to prescribe exercises rather than just jumping in with any. Strengthening the muscles really does help, though.

Mike1

Greetings. I have OA in my spine as well as everywhere else and also Degenerative Facet Joint Disease, a couple of compressed discs and a detached disc in my neck. I can sympathise with the pain and spasms you get , I cannot stand unaided for anything over a minute or so neither can I sit in an upright position. I am afraid there is no advice that I can offer you about explaining it to people as I don't bother as I live alone and my cat has heard it all before. My baby Sister also has OA in a few places so she understands without me saying anything, I have a couple of mates who visit occasionally and I don't moan to them for fear of frightening them off as I really need their visits. My Home Help has mild OA as well and there is no need to explain anything to her as she takes one look and often tells me how I am feeling!! I would suggest, however, that you download a couple of the guides on this website and leave them lying around so that your family can read them. All the best.

AusJen

Thanks, I'll have a look for some. How do you mentally adjust to getting use to feeling constant pain or aches please? I don't want to be constantly saying it hurts, at the very best it's a dull ache reminding me the damage is still there.

Lilymary

Hi AusJen, while I don’t have experience of back pain, just having it in my hips was bad enough. The pain was constant and debilitating. For those who are fit and well, as I had been previously, it’s very hard to understand how it feels to be in constant pain, having to adapt how you do things, prioritise, let some things go, and manage your pain levels.

You may find some of the tips in this link helpful. I found distraction worked well for me, doing something that takes your focus away from the pain.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

The fatigue that comes with arthritis can also be debilitating, and you may find this link helpful too. I also found various arrangements of cushions and pillows both sitting and in bed gave respite and helped getting some decent sleep (although the pain still woke me most nights).

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

I’m lucky that my husband, despite being very fit, has been very supportive, and several family members have also had joint replacements, but arthritis affects the whole family, and it really helps to be honest with them, about how the pain feels, how it affects you, the things you find difficult, and ask for help.

Mike1

How do you mentally adjust to getting use to feeling constant pain or aches please? I don't want to be constantly saying it hurts, at the very best it's a dull ache reminding me the damage is still there.

Hi AusJen, I am not sure that after getting on for 15 years with OA that I have mentally adjusted to the constant pain. Despite having tried every med available and now being on Morphine for over 7 years the pain is still there and varies depending on a variety of factors. The Morphine only knocks the edge off and, the same as many others, distraction seems to be the best method; all that means is that you do something you enjoy and can actually do which could be watching TV, reading, knitting or in my case making models. Having gone from a very physically fit and active ex-forces bloke to now being in a wheelchair, I often mourn about what I used to be able to do (I can't even drive now as the DVLA have withdrawn my licence), am depressed and can cry at the drop of a hat, I got through a couple of boxes of tissues during the Paralympics!! I don't bother saying it hurts as I live alone and nobody would hear it anyway; I wake up screaming after only a couple of hours kip due to the pain but my cat has become used to that and does not react. All I would say is do whatever you can whilst you can, I really hope that things do not get worse for you and trust that you will adapt given time. Hang in there.

Lilymary

Sending you hugs @Mike1 xx