need help! Chronic pain all over

[arvine]

at my wits end hurt everyday, now morning till night, on prdnisine originally diagnosed 8 yrs ago with pmr, now osteoarthrits, throughout body, being on pred now 4 mgs can only take tylenol, doesnt touch pain

[Sugaree]

I came on forum to see if anyone else is in constant pain,and there was your post. I’m sorry for all that pain and your meds aren’t helping much. Tylenol is no match for osteoarthritis. I have been awake since 2 am, too uncomfortable to sleep. I spent many days this week with pinched in my neck,caused by arthritis and very bad sciatica. It never goes away😧

What do you think comes first depression or worsening pain? Been thinking about that today. You’re not alone, my meds make it bearable only if I lie in bed. I am sending you a hug because I understand.

[arvine in reply to Sugaree]

Oh thank you, well think the chrinic pain leads to depression, Im still on prednisone after so many years so cant take other inflammatorys that may. Be helpful, trying to tsper pred, getting to 3 1/2 mgs but takes so very long, often tearful days, take care

[Nothing_but_books in reply to Sugaree]

Your response encouraged me to add my two cents. The times my pain is low are unpredictable, and often followed by it being much much worse.

No, Tylenol doesn't do anything. No reason to even take it. There's nothing I can count on to reduce my pain, but many things I know will make it worse.

Doctors want patients that improve. I've had too many imply there's nothing wrong with me because they have no idea what's wrong. It took a long time to know that's not all that unusual.

[arvine in reply to Nothing_but_books]

So have you been diagnosed with a condition , and had all the common tests done, MRI s, catscan exrays etc,

[Nothing_but_books in reply to arvine]

Years -- no, decades of tests. No diagnosis.

In that time, I've been given drugs that destroyed my vision, hearing, and balance; I've dealt with SA from a neurologist, and condesending bull from lots of other "professionals" I'm done with doctors, for chronic pain anyway.

[Sugaree in reply to Nothing_but_books]

Hi books, I have pretty much given up on dr.s here too. My healthcare won’t cover mri for osteoarthritis patients. My dr. gives me mild pain meds,anxiety and depression meds and a bunch of blood pressure meds. If I go into pain management I can get MRI only if I agree to nerve shots or epidural. Everyone I know has had limited if any relief from nerve blockers and they prescribe opioids which I don’t think I am ready for. I had a definite diagnosis from an arthritis specialist from just one exam and consultation. Osteoarthritis and pinched nerves probably caused by arthritic bone growth and disc degeneration. She disappeared after covid.

I didn’t know you had chronic pain too. Always hoping for less pain tomorrow. Thanks for the support.

[arvine in reply to Sugaree]

So can I ask what mild pain meds wrre you given, and do you take prednisone as well, and are your current meds managing your pain, I have had 3 sessions of ultrasound guided nerve blocks, but those are given in spine for spinal stenosis, degenerative disks where some compressed nerves from buldging disks have caused nerve pain in frint thigh and shin bone, but does not address the all over pain , especially in hands right now from arthritis

[Sugaree in reply to arvine]

hi arvine, I take butalbital,tramadol and a muscle relaxer. Not altogether, I am only allowed 3 of each a day. I take anxiety meds and antidepressant. Butabital is my favorite headache, neck pain medication. I still get migraines but I had to stop best meds for that, the triptans, like imitrex and others because I have hypertension. I made it to church this morning so not a bad day. Spent the afternoon recovering in bed lol.

[Nothing_but_books in reply to Sugaree]

Chronic pain is how I ended up at HU. Most of the first three years of whatever this is, I couldn't walk because of pain. Losing my independence did a number on my emotional stability. On my environment too. They all bounce off each other, as I'm sure you know.

[arvine in reply to Nothing_but_books]

Sorry but what is HU, I am in Canada and not familiar with this

[Nothing_but_books in reply to arvine]

No, this is my fault. I meant our forum, HealthUnlocked.

[Ingy50]

I fully understand how you are feeling with regards to your pain , I like many people on this site go through the same problems with pain and I also like others have said have many tearful days and lack of sleep. In UK the NHS is in a bad way for instance, I have been put down for an urgent MRI on my neck as my AS has spread all the way up my spine into my neck and although I’m on urgent I still have to wait nearly 3 months before I can be seen. It’s crazy and then you have to wait to hear from the neurologist. This doesn’t seem to be enough help or care for people that are in chronic pain. I sometimes wonder if doctors don’t realise how chronic pain totally destroys your life when you’re in too much pain to go for a walk too much pain to be sitting down too much pain to lie down in bed. What the heck do you do in this country? They even try and cut down on the morphine and diazepam as they say they are addictive drugs I’ve had some for 20 years and I’ve never been addicted to them because I was with a nurse for many many years and she always used to say to me if your body needs it you don’t get addicted to it, unlike if you’re just taking it for recreation purposes.I wish I could give you some advice but all I can tell you is that this is a wonderful forum and there are people on here that can help you and they don’t mind how much time you talk to them even if it’s only for shoulder to cry on, all the best my friend and please come back whenever you need to .

[cyberbarn]

I am sorry to hear that you are all struggling with so much pain. I had a rheumatologist who thought I 'just had fibro' but I knew what the criteria was and I knew he hadn't bothered to check it, and I knew I didn't have it. I ended up having to make a formal complaint against him to get a second opinion which found spondylolisthesis and psoriatic arthritis.

But I just want to comment on the question of which came first, the depression or the pain. For many years it was thought (mainly because doctors don't listen to patients very well) that people were depressed because they were in pain. After all they said, who wouldn't be depressed if they were in pain! So treatment of pain started to involve psychosocial activities.

However, in the last few years the research has shown that pain is caused by inflammation, and that inflammation can travel to the brain and in the brain it can cause depression. So it is the inflammation that comes first, which causes the pain and depression.

And that is why people with rheumatological conditions who are treated and the pain levels drop right down, also lose their depression and anxiety. It wasn't the pain causing it, it was that what was causing the pain and the depression was something else, it was the inflammation.

There is a book called The Inflamed Mind that is worth getting hold of.

[Astridnova]

Hi, I have bad arthritis in my neck which affects both arms. You have probably tried all these things, but I have found two things help. One is a neck stretching inflatable collar which surgeon and chiropractor both approved, which I purchased on ebay for $12.00, and the other is heat-packs. With ice packs as a back-up. I find those methods more effective than painkillers. The surgeon said that if I use the inflatable collar regularly, my cartilage will have an opportunity to grow back a bit, since the bloodflow will improve.

[Cappo]

hi arvine I won’t bore you with my story been going on since 2016 thought of ending it a few times now on pregababaline and morphine as my main meds seems to help me get about the pain never stops you just have to put up with it good look in finding pain free days/nights regards cappo

[Crystallmatters]

I am so sorry for you, I know how terrible Chronic Pain and Pain is. I have suffered for over twenty four years, to the point I tried to end it all, this is when I go the first useful help, although at first I did not believe a lot of what they were trying to teach me. Every case for a person is different, however after me studying for many years what major part the brain plays in all of this and with amazing help which momentarily is still going on, I will tell you a few things that have worked for me. SOI also have developed FND to go with it all.

I know for me now pain causes me to be depressed , um well come on not surprising for most of us is it, with have to live through the fog of pain and no one really understands or cares unless a pain sufferer or plenty of kind people out there, but it is hard work putting on a happy face and a lot of the time saying yes I am fine, when really what you want to say is No No I am really having a Sh????? and things are really Cr???? , All I wish for is one good day or a few hours of calm. In fact when things are calm, I worry a little because that means most of the time a storm is on the way.

So what has happened through all these courses I have been put on and specialist's. I have now been lucky to be with for the moment.

I guess first an apology for multiple failed surgery by a surgeon that should have retired.

A recognition Pain is real weather Chronic or Acute and I have it.

Yes Pain is the route of all evil's and it plays havoc with my brain.

Nearly , in fact all specialist apart from one I have seen out of many don't even know or have ever suffered Chronic Pain.

So I was lucky because the mental health team Doctor first put me on medication for sleep to stop restless leg syndrome and then enable me to get some sleep. It works, why because I have more strength in the day to couple with a day that I really don't know what to expect, I just hope.

The Doctor did not stop there he seam's to know more about medication and symptom's certainly than my doctor.

I have a good balance now, I choose to try to still work and this hurts me a lot and sets me back, I don't know how long I can keep this up.

I had a great day this week so I went crazy and did lots, Oh dear , yes I spent the next day in bed and more, I should have paced my self.

Pace Pace yes it works it is difficult is the haze pain fog, disability , crazy thoughts to always get things right.

Music, yes a good set of noise cancelling head phones and finding a real cocktail of music to suit different experience's the brain is having. Finding the right rhythm beat is vital and when you do, you must experiment turn it up and down and find the right time for rock and roll ,

Loud -to - fine tunning calming music, along time before bed, next its hard you learn to breathe , to breathe and remember to breathe, to take a moment even to say to your self yes this is a really crap time I am having but I have to except it, it might be here to stay, the one thing we all wish won't happen. Yes to recognise the situation I find myself in and stop and think what can I do to help this bad bad all over body pain, its again is hard when you are in the moment, I certainly most of the time don't get most of this correct and for one moment it is not a cure, it is just a volume control you might be able to turn up and down.

There is more to all of this but I now must take some pain killers, no helpers a bath , play a game of cards with my partner with some calming soothing music free on line.

I am grateful for this site we all only try to help each other, I also know their are carers trying to help loved ones. The frustration of the under resourced NHS from government level is very sad, we must all try to work with it , but keep the pressure on fight our corner but don't let it get to you, as this also increases pain.

I want to say before I get ready for bed and that means between now and 1am in the morning but I hope before midnight.

Being anxious, worrying, I realise does increase my pain, it is impossible I think to not do these things how-ever, me calming myself , in a bad situation stopping taking a breath and recognising the bad situation is helping a little.

I only hope if anyone reads this , it can help a little if only sometimes to turn the volume down a little.

Love to you all xxx

[Konagirl60]

Hello. I’m not certain the doctors you’ve seen are believing you. Many people in pain are being brushed off by doctors today. They think our pain is emotion based and it’s not….it’s acute physical pain and they won’t help us.

Can you go private and get another opinion?

I think you’d benefit from using magnesium bis-glycinate for any muscle spasms. Can you take Robaxin? The methocarbinol in them helps me and I have severe neuropathic pain.

If you’re feeling anxious, there are passionflower pills that are natural. They really calm our nervous system.

Keep me posted.

[arvine in reply to Konagirl60]

Thank you

[arvine in reply to Konagirl60]

It s not so much muscle spasms just a hurting all over , joints etc, hands fingers too actual pain, have been told osteoarthritis, and severe osteo in right hip, consultation Nov 20, re hip replacement, been advised by GP and rheumy to get off prednisone, trying to taper now to 3 1/2 mgs, virtual appt with rheumy this Minday, want to ask if I could take naproxen once in while to elieve some pain and hurting, as tylenol has little affect

[Konagirl60 in reply to arvine]

Naproxen is effective for some people. I’ve read it can upset our gut. I use it once and a while if my injured pudendal nerve flares.

Methocarbinol is also very effective with wide spread pain.

Good luck at the doctor’s appointment.