How to explain your pain

[arvine]

Seems nobody understands our pain, I have posted whatbI am experiencing, chronic pain, every day,, yet friends and family dont get it, say things likev” you have to getnout, exercise” , why dont you go away for weekend, 2 1/2 drive, see friends, “, you need to socialize more”, I am at mybwits end many days, and tired of explaining really how much pain I have, does anyone else have this going on, dont want pity, just want people to understand, how pain is limiting me with every day life, it s frustrating and adds more stress, some, especially family and close friends only trying to help Im sure, and cant accept I am in constant pain, but it is hard to listen to them, just the same

[Betsy50]

Hi arvine oh I hear you !!! I live with constant pain have done for years it's more about accepting your limits as to what you can manage daily took me a long long time to realise this. You are not alone but people who don't live with pain will ever fully understand xx

[kev60]

Hi, I think it’s very subjective as in your pain is your’s and only you know how it feels. Last year here in the UK the gp brought out social prescribing? And I was invited to join a group of people who suffer with pain, it started with 2 and by the end of the year there were over 60 people who showed an interest. It was good as people with different diagnosis talked about the pain they had. I have FND, GORD, COPD and OA of the spine and suffer with pain in three areas abdominal, back and chest. It was good to share ideas and information an each was different also if you didn’t want to talk you didn’t so no pressure. I am always amazed how if it works it gets dropped as is the case over here. I love it when you go to the doctor and they say you’re looking well how can I help you lol . My pain at the moment is 8/10 our doctors prefer this to percentage’s and is 24/7 but you do just find what you can do and don’t dwell on what you can’t do. Good luck with your endeavours. Kevin

[Kingy01]

I know what you mean it feels like im being pestered all the time into do stuff but the constant pain when im up and about is to much, i know there only trying to help byt just don't understand the pain

[Marylyn]

Hi I hope my information is going to be helpful not only you but all those others that are suffering needlessly.I believe your pain is nerve pain most likely from a vitamin B12 & Vit D deficiency possibly low iron as well .If you have had covid jabs then they can cause nerve damage resulting in severe bone,muscle pain & neuralgia .I saw my elderly friend who was vit B12 & iron deficient scream out in pain for weeks after the AZ jab which caused a stroke.I have been treated 10 yrs now for vitb12 & D deficiency,I have severe cervical & multilevel spinal stenosis, scoliosis,spondylosis,hearing & vision loss ,having weekly methyl B12 injections but no pain .I believe all these yrs the b12 is keeping the pain at bay & renewing mylien sheath .So if you convince your Drs to excuse these deficiencies then you may find some lasting relief.Serum b12 must be over 450 pmol/l otherwise a deficiency exists .

[arvine in reply to Marylyn]

Thank you Marylyn, I am taking vd3 , 4000 units daily , but I ll ask about B12

[Southerngirl2787]

I have accepted that no one (in my immediate world) understands my pain. Not that they don't try, but I don't get in details, my preference is not to scare those I love. They do encourage trips, doing things, but have had to learn that I cannot make promises, and that's caused some pain as well. My pain started with a mystery parathyroid tumor, undiagnosed by three doctors, who refused to listen to my symptoms...so before it killed me, I diagnosed myself, referred myself to surgeons in Tampa FL, and got it removed. Unfortunately, not before intense nerve damage was done, I've had surgery in both hands, nerve transfers in both legs, just had nerve impingement surgery along spine; add 10 spinal fractures, 4 fusions, Lupus and AS. Some days just standing up straight is impossible. But many days I can do some things, but nothing like I used to do. Had to disability retire, and that hurt! Nerve pain is the worst, well, Pain Doc says AS is high on the list as well. I take ALA supplement and Life Extension bioactive Complex Vit Bs...extra B12 sublingual, and it makes a difference. I've had a spinal Stimulator implanted, and unfortunately I am rejecting it, so it's coming out...it does help with the nerve pain, but not the 6 bone on bone discs. I'll say that going outside does make me feel better, and it's 100 degrees and humid now for months, I'm in southeast Texas by the Gulf of Mexico. Some mornings just getting early sun and watching the critters outside changes my pain levels and mood. I walk in the neighborhood when it's a good morning, meaning I can move safely! I have mourned the loss of friends with chronic pain and disease...I'm sure they don't realize they just pulled away, but it happens, and I miss them...but many days I'm very distracted and even riding in a car will cause immense pain and not something I willingly wish to do. I also find listening to music can release the stress of the pain...concentrating on something else besides the noise of the pain.

[Marylyn in reply to Southerngirl2787]

Sublinguals b12 will not relieve nerve pain or repair demyelination that is occurring. .Un fortunately even specialists are not aware of these facts .I have been injecting ally with methyl b12 for 10 yrs & don’t have any pain with severely cervical & multilevel spinal stenosis.You require folate , Vit D & red cell magnesium levels checked.

[arvine in reply to Marylyn]

Sorry what is methyl B12 and what is demyelination, not familiar withese terms, I apso have spinal stenosis, dd, buldging disks, nerve entrapment

[katieoxo60]

Hello Arvine, I understand what you are saying. I have an artificial knee which means one leg is shorter than the other, plus multi joint arthritis walking is possible but in slow short uneven gait that causes pain in some muscles due to poor posture. Grabbing walking aids and trying to carry equipment to walk is exhausting , so is trying to walk at other peoples pace . So going out is a mammoth task and even some families don't understand. I also have to maintain my home , garden , cook, iron wash , shower clean amongst many other things. But I would love to go back to a group but most were disbanded in my city due to the virus epidemic. I would like to go on holiday like i used to but need a companion . How do we explain that these things distract our minds from the pain which is good for us. It is about accepting the limits of your pain or disability and changing lifestyle to meet what you are able to do. And assess what your pain arises from ,some people are housebound due to serious back pain . while others are wheelchair deependent or walking aid dependent . They are all disabled and mostly in pain. My granddaughter and many medics thought I was depressed but it was not its the difficulty of getting out and it been accepted its painful only you can convince others.

[Sugaree]

I think most of us would agree that it’s hard to talk about chronic pain to those that don’t have it, especially family members for me. I decided not to speak about it to my adult daughters. They think there should be more things to try for pain relief. As if I am content with arthritis, compressed nerves and migraines. Then there are well meaning people who will say “I don’t like to take pills except for Tylenol when sick”. I always tell them they are very blessed with good health. Here on the forum, I am with people who understand the battles of pain and finding the right medication. It’s so comforting to know I am not alone. Have a great day and remember most people don’t have chronic pain and they don’t really understand. 😊

[arvine in reply to Sugaree]

Yes so true, thank you

[caringkriket]

For folks that don't understand, I started wearing a bandaid on my forehead! If they can't see it they don't understand what you are going through. Same as depression and anxiety! If THEY CAN'T PHYSICALLY SEE SOMETHING IT'S NOT REAL! Therefore when they physically SEE SOMETHING it helps them to understand most of the time. It sounds kooky but it works. Unfortunately only visual aides help a person understand!

[arvine in reply to caringkriket]

Eow! Creative, thank you

[caringkriket in reply to arvine]

You are most welcome! Like I said, it sounds cray-cray but it has worked with folks!

[Madlegs1 in reply to caringkriket]

Love it!