Pain free?

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Pain free?

Postby SchroedingersCat » Thu Jun 18, 2015 10:09 am

Question (and it's probably been asked before, but the Board search facility crashes out as the words are too common):

does anyone here actually achieve a state of being pain free, with or without meds?

I ask because time and time again I see people listing all the meds they're on, but finishing by saying "but I'm still not pain free". Personally I've always assumed I am going to be in pain more or less every day for the rest of my life unless medical science finds a cure, but Whoami's recent post about long term effects of meds raised the question in my mind again.

So - anybody achieve reasonably long periods without pain?
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Re: Pain free?

Postby Susan Stokes » Thu Jun 18, 2015 10:48 am

In my case it's pain, pain all the way. I too have seen all the lists of medications but I don't even ask the GP about them as no-one has said 'Yeh, pain free'. I tend to find when the pain is less the fatigue steps up. Can't win. The best thing I can do for pain is try to do something that takes my mind of it for a while.
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Re: Pain free?

Postby TheHud » Thu Jun 18, 2015 11:25 am

Pain all my life, without the meds i might as well of given up years ago. I can and have coped with significant makes you feel sick pain for most of my life, but over the last 3 years or so it has stepped up another notch, so now the meds have stepped up a notch. If i don't need them and can deal with the pain, I don't take them (painkillers only) the pregab is essential to prevent the levels of pain that make me think 'what is the point'.

Regardless of what your illness is (anything), no pain only really applies if you want to be in hospital on a PCA with someone like my hubby keeping you out of it. He is a pain management specialist and the main reason that people cannot cope with some levels of pain, is they expect to be pain free. Never expect to be pain free you are on to a loser before you start.

He works in acute pain so it is even more distressing for someone who has been in a car accident and has multiple fractures inc ribs to find out they will have to endure some pain regardless of medicines best try or end up asleep with no life.

In our case, as current and new knowledge on fibro says, it is the nerves that are triggering, to alleviate that type of pain, only meds that target nerves in some way will work. I also have arthritic and other pain so a mix of codeine, NSAID's and paracetamol work in various combinations to, mainly allow me to at least type this or shower, basically function and above all get a few hours sleep. I got a full run of 3.5 hours last night and today I am cooking on gas :-D :-D Lord help me later :(

If you can accept the pain without taking too many painkillers (which often don't work with Fibro or any nerve based pain) then it is better for you, but don't stop meds that are there to reset your nervous system and allow you to function. I left it too long to get help and I now have even more issues.
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Re: Pain free?

Postby lizashfield » Thu Jun 18, 2015 11:33 am

I am in constant pain. It never ever goes away. I take meds and they take the edge of - I only realise this when I forget to take them and the pain is even worse.
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Re: Pain free?

Postby SchroedingersCat » Thu Jun 18, 2015 11:35 am

Unlike most, I have no other ill health conditions, so I manage quite well with just the fibro, hence my preference to remain med free. A superfit friend (male, early thirties) has just been diagnosed with syringomelia and fibro, he's wondering how long he can deal with the pain, poor sod, and he's a real tough guy :(
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Re: Pain free?

Postby TheHud » Thu Jun 18, 2015 11:43 am

SchroedingersCat wrote:Unlike most, I have no other ill health conditions, so I manage quite well with just the fibro, hence my preference to remain med free. A superfit friend (male, early thirties) has just been diagnosed with syringomelia and fibro, he's wondering how long he can deal with the pain, poor sod, and he's a real tough guy :(



What symptoms do you have that took you to the doc and a diagnosis, what kind of pain etc? Tell me to get lost if you think I am being intrusive :( it's just not often you get a fibro alone diagnosis and it will be a helpful to hear your symptoms so I can separate which pain is associated with what condition for me.

Many thanks :)

PS tell your friend to get the surgery when offered you know how some people prefer to leave help til its too late to restore full function ;-)
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Re: Pain free?

Postby sarahsnow » Thu Jun 18, 2015 11:58 am

The hud, I have only been diagnosed with fibro, nothing else. But I do medicate...I have gabba at 600mg 3x daily, amitryp 20mg at night, folic acid (?)at night and 60mg codeine at night. The codeine I try not to take during the day if I can help it. My main problems are pain in my legs,feet,arms,wrists,shoulders and a bulging disc.
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Re: Pain free?

Postby Zia2014 » Thu Jun 18, 2015 12:08 pm

I had some pain free days early on but after my flare - caused by not realising I shouldn't be going full pelt at everything because I didn't know what was wrong - I have been in pain every day. The meds take the edge off and enable me to move really, when I've had breaks in-between I am almost unable to move because it is so painful.

And I never wanted to take meds, so it's a big thing for me. I take enough to be able to function but not anywhere near the max, and that is my decision. It's a personal one obviously. I could take a lot more and be much better pain-wise but I would rather not. I certainly don't want to take more than one pain med as I take several other meds for several other conditions.

I also have knee probs, IBS (no meds for either), Vit D deficient and depression (take meds for those). So I have always had some pain in some places, just not all the time, but now it is constant.
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Re: Pain free?

Postby Baby-Hedgehog » Thu Jun 18, 2015 1:02 pm

I too only have Fibro (with it's associated add-ons: IBS, Vitamin D definciency... I'm sure there are more!)

A friend, with personal experience also believes I've got mild, recurring Post Viral Fatigue Syndrome (I thought I might have ME, but she says it's more likely PVFS as I don't have some of the other symptoms of ME) - I can explain those ones further if needed, but it will be a lengthy post if I do

Anyway, my Fibro symptoms - constant bad chronic pain in my knees, hips and elbows (lesser chronic pain in my wrists, neck, lower back and shoulders); headaches, dry eyes, the IBS and Vit D deficiency as mentioned; when it's bad - pain everywhere, even in my finger nails and hair roots - when I'm having a flare up I can't bear to be touched, a hand resting on my hand, or shoulder is like being buried under a tonne of books (no, no personal experience, but a vivid imagination :lol: ), severe and continual issues sleeping, but constant exhaustion.

Oh, and a symptom that no one knows quite where it goes...... (maybe it's the PVFS)..... I run a higher than 'normal' temperature, every day (between 99-101, in old money).

I'm sure there are other symptoms, but the fibro-fog (there's another symptom) means my ability to remember what they are is shot to pieces :D

Hope this helps TheHud

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Re: Pain free?

Postby TheHud » Thu Jun 18, 2015 2:09 pm

Thanks everyone it does help.

There are so many cross over troubles that I can already see a consistency line, which helps with the 'is it in my head thing'. I too take a high dose of prescribed folic and multi vit. The bulging disc will be classed as a separate nasty for you Sarah, I hope it's not a standard Fibro symptom.

Oddly I only got the folic acid after last blood tests, yet in my notes I am showing as folic deficient in every blood test since 2008

All the other areas are same and Sarah you are the same as me med wise apart from I take aspirin as a blood thinner so take 300mg and also get through a fair bit of ibruprofen and parrots as I call them. Plus I have reticular vasculitis, they have been zapping me for the last 6 months with the laser to reduce the pressure to hardly anything to save my sight. I also have hyperpigmentaion so that does not help.

I suppose that is why I am so angry about this fibro thing, I have a bucket list of things I want to see, just incase/when the worst happens.
I have still not seen the northern lights, or the panama canal, India etc. I can barely leave the house now unless its a 'good' few hours of eased symptoms.

I am seeing the doc tomorrow and I am trying to make a full list of my issues because I never told him very much, rarely went to see him unless I needed urgent intervention lol I want him to tell me which bits of 'suffering' belong to which illness so I know what meds for each and can shout and rant at the damn thing by name :-x :crazy: If I tell him that he will have me committed. ;-)

So thanks everyone at least I can separate a few out myself and see what he says.
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Re: Pain free?

Postby sarahsnow » Thu Jun 18, 2015 7:18 pm

The hud, my bulging disc is a gift(!!!)from working as a home carer for 15yrs!! I thought that it was a thoughtful leaving gift!! But due to this and the fibro I am unable to do a job I loved anymore. :(
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Re: Pain free?

Postby TheHud » Thu Jun 18, 2015 8:20 pm

sarahsnow wrote:The hud, my bulging disc is a gift(!!!)from working as a home carer for 15yrs!! I thought that it was a thoughtful leaving gift!! But due to this and the fibro I am unable to do a job I loved anymore. :(


My back is kapput, especially the last 2 years, it was hard. I cared for my mum in law who had advanced dementia for the last 8 years. Right to the end and at the end with the end of life team coming in and out. It was a very physical job because she remained as strong as an ox but no one was home for a long time. i am sure you can imagine the cleaning, I would part carry her on my back and she was 13.5 stone and 3 inches taller than me. Very nearly killed me. Sometimes i would sit on the floor with her because she had slithered down and would not try and get up and I was completely out of anything and wait for hubby to come home.

Trouble is because of the 24 hour caring I could never get to the docs because they were only open during working hours. Hubbies holidays and any respit was used up for essential breaks and my eye hosp appointments. So docs visited MinL under sufferance but not one ever asked me how I was. Jan rapid deterioration and then i went docs while the nurse was due, with hubby, I needed help to get through to the end of her life. Pregab, without it I could not have gone on anymore, I could not lift my arms muscles all gone, back knackered, brain thumping, pain shooting.. She died on the 28th feb. I crashed and burned, 8 years of putting it all aside and just dragging myself through the day and night. Its going to take some time for me to recover. I will.
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Re: Pain free?

Postby SchroedingersCat » Fri Jun 19, 2015 9:05 am

TheHud wrote:What symptoms do you have that took you to the doc and a diagnosis, what kind of pain etc? Tell me to get lost if you think I am being intrusive :( it's just not often you get a fibro alone diagnosis and it will be a helpful to hear your symptoms so I can separate which pain is associated with what condition for me.


This is the symptom list I wrote out recently for a trip to Occupational Health. Some of these have developed post diagnosis (marked with a P), but hopefully it will help you. I'm also not on any medication at all, so none of this can be down to medication side effects.

Constant pain (ache) in left hip and leg down to ankle and lower back, gluteus maximus, knee and Achilles tendon
Painful muscle spasms in hamstring and calf, mostly left leg but occasionally right (P)
Ache in both forearms (upper side) and wrists
Right shoulder (similar pain to rotator cuff problem I had in left shoulder about 10 years ago) (P)
Pins and needles in hands and wrists (these are getting worse and more frequent)
Pins and needles in feet (also getting worse and more frequent) (P)
Morning (post sleep) stiffness in most muscles, takes anything upwards of 15-20 minutes to be fully mobile
Eyesight deterioration when tired (need glasses to read, but not if I’ve slept well) (P)
Sensory overload (especially sound)
Memory issues (e.g. mid conversation forgetting the word I want to use, forgetting whole conversations from fairly recent past, forgetting where I’ve put things – have to make lists and keep records to remind me about things)
Concentration problems
Stiffening up if holding same position too long
Pressure pain from sitting still
Stabbing pains in various parts of body at random, but especially hips, feet and hands
Stiff hands, that stop functioning altogether if very cold
Constant level of fatigue, with occasional bouts of complete exhaustion that hit instantly and can last 5 minutes or several hours (it’s literally like someone ‘pulled out my power cable from the wall’)
Elbows are usually painful and so sensitive, even someone brushing past and catching them with a bag or clothing is painful
Rib pain that can make breathing painful (P)
Sporadic balance problems (P)
Sporadic fine motor skills problems (P)
Sporadic hand to eye coordination issues (P)
Allodynia
Hyperalgesia
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Re: Pain free?

Postby migrembe » Fri Jun 19, 2015 9:43 am

The answer to your question is simple - NO!

But without the medication i wouldn't be able to get out of bed. So they make me pain less-er, rather than pain free.

I am on cocodamol 30/500 x 2 up to 4 times a day, usually take three doses and Duloxetine 60mg once a day, which is only things that i am not allergic too, do not have severe negative reactions too and have helped.

And i meditate, twice a day, most days and it helps me sleep, which also helps the pain levels.


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Re: Pain free?

Postby TheHud » Fri Jun 19, 2015 11:47 am

Thanks everyone.

This could be a very worthwhile thread for everyone re medicate or not, to what level and with what. Other things that help.

I saw doc the morn and his first question was have I had time to come to accept fibro? I said yes, sort of, but its not easy whilst I lived in the deluded world of an 11 year menopause and eventually I would be back to my arthritic me, I just put it all aside and waited. So now no waiting, its for keeps, so. Having asked on the fibro board and read as much as I could, these issues with my hands which have become progressively worse since having jamie, 24 years ago (carpul tunnel) well its totally disabling me. the nodules are getting out of control and now my remaining 2 unaffected fingers have been under attack.

So he has got me into the hand and wrist place on the 30th june, speedy or what! He asked did I want to go straight to surgery to get some of the nodules and thickening on the ligaments removed. Opted for a bit of time on that one.
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