General Chat

PD IS THOUGHT BY SOME TO BE PAINLESS
NO WAY APART FROM AT TIMES TOTAL IMOBILITY
THE PAIN IS BECOMING UNBEARABLE

Sylvia, glad the assessment is over and you seem to have everything sorted out as best can be. Hope the change in meds helps not hinders things. Isn't it nice to get a bargain when you shop? I haven't bought much for ages, I must clear out some old things first lol
I have to ask, how do you do Greek roast spuds? I think they might be like the ones we had in Corfu and I did ask the waiter as his Mum was the chef but I forget what he told me now, he was telling me so much info about the different things I got a bit confused. It doesn't take a lot these days!

Puss, do you remember when I first joined in on here in 2005, I think my first or second thread was The bed is broken lol and I was asking about memory foam mattresses then, we got the whole divan package and it is comfy and warm, the only thing that bugs me is that you can only turn it top to bottom, not over and it has to be aired for a few hours each time you change the linen so means by the time I get up and strip the bed, I have to leave it till mid/late evening before remaking it with clean linen. Can't believe it's nearly 5 yrs old and I have been on gr for 5 years too, come the weekend.

I get the bad dreams a lot, they drain me and I often wake up crying, so much confusion in the dreams yet lots of links with my past family, friends and places, my brain must be in turmoil! I know it's the fm but doesn't make it any easier to cope with.

Puss, does that pain come under your bust and round your ribcage, like someone sticking hot needles in, because I have had that recently on one side and it's not nice at all, luckily mine doesn't stick around too long. I have lots more aches, pains and swelling in my left side than my right.

Have you ever had shingles in the area you get the pain as sometimes shingles can leave you with chronic pain. see below:

What is postherpetic neuralgia?
Postherpetic neuralgia (PHN) is a nerve pain (neuralgia) that persists after a shingles rash has cleared. If the pain goes, but then returns at a later date, this too is called PHN.

Shingles is an infection of a nerve, and causes a typical rash. It is caused by the varicella-zoster virus. About 1 in 5 people have shingles at some time in their life. Shingles can occur at any age, but it is most common in people aged over 50. Most people with shingles have pain, but the pain usually eases soon after the rash clears. PHN is pain that persists. (See separate leaflet called 'Shingles' for details about shingles.)

How common is postherpetic neuralgia?
PHN is unusual in people aged under 50, and if it does occur it tends to be mild. PHN is more likely to develop, and is more likely to be severe, in people aged over 60. About 1 in 4 people aged over 60 who have shingles develop PHN that lasts more than 30 days. The older you are, the more likely it will occur. However, early treatment of shingles can reduce the risk of developing PHN.

What are the symptoms of postherpetic neuralgia?
PHN causes pain on and around the area of skin that was affected by the shingles rash. The pain is mild or moderate in most cases. However, the pain is severe in some cases.

The pain is usually a constant, burning, or gnawing pain. In addition to, or instead of this, you may have sharp or stabbing pains that come and go. The affected area of skin is often very sensitive. Even slight touch may cause pain such as the rubbing of clothes or a draught of air on the affected area. You may also have reduced sensation to touch, and be itchy over the affected area.

Why does the pain persist in some people?
Shingles causes inflammation of the nerve. Pain can be expected whilst the rash and inflammation occur. However, it is not clear why some people continue to have pain when the inflammation has gone. It is thought that some scar tissue next to the nerve, or in the nearby part of the spinal cord, may be a factor. This may cause pain messages to be sent to the brain.

Will the pain go away?
Without treatment, PHN typically eases gradually and goes. In about 5 in 10 people with PHN, symptoms are gone by three months. However, without treatment, about 3 in 10 people with PHN still have pain after a year. Some people have a slow improvement over a long period of time. A small number of people do not have any improvement over time.


i have not had shingles but know people who have and then get the pain later on after they think the shingles has gone away.


Lizx

ouch LPC

that's a lot of morphine! I hope the GP will help when you see her on Wednesday.

The assessment went quite well ................. they didn't have too many changes to suggest although the nurse thought I should talk to the doc about possibly taking more of the tylenol+codeine as that would reduce the amount of tylenol I was taking in ................... as tylenol is close to paracetamol and too much causes liver damage, you might understand why. I currently seem to be averaging about 4300 mg of tylenol a day, and the maximum advised dose is 4000mg. Replaicng 2 625 mg tablets with the tylenol+codeine at 500 mg each would bring my dosage down to 4000.

And there's me been trying to keep off the codeine!

The physiotherapist turned out to have originally been a kinesiologist, and had worked for my physio Matt for a couple of years in charge of the gym, overseeing gym exercises for patients, and considered him her mentor. So she didn't see any need to change any of the exercises I was doing!

She did pull up on the computer the spinal x-ray I had last week. The hip is in pretty good shape, but the 5 bottom vertebrae now show damage ( it was 3 originally), and I am showing some curvature of the spine (scoliosis) in that area. Plus a couple of the discs between the vertebrae seem to be getting thin or compressed to one side.

The occupational therapist had a couple of tips that might help me be more comfortable in the car or at a theatre. That was basically it.

Oh, and a suggestion that it might be good for the joints if I lost a bit of weight. :)))

In all ..... I seem to be doing most things right. Which is both good and bad! Bad because they didn't have too much to offer me to reduce the pain.

I then walked about 4 or 5 blocks to a small mall, had lunch there and went into an outlet store for one of my favourite name label brands. I was very well pleased when I found 3 summer tops at half price ............... and even more pleased when I got to the cash register and discovered that there was a special sale on today. I got the 3rd top free!!


But I did do too much ......................... I'm aching from top to bottom now, and OH has just had do the Greek Roast Potatoes.

I go to see Matt the physio tomorrow morning ...... so I shall have to tell him what Natalie the physio today said about him :))



Take care everyone



sylvia
xxx

got gp to see me wed at 9 there must be something other than loads of morphine ive had half a bottle to day and im just comfortable, really cant cope with the burning nerve pain, hope you all have a good ite speak tomorow xxx

hiya julia, mine started as abdominal low ache that would get to a real bad pain had it now for 18 yrs, when they cant find out what it is they should keep trying, did the pain begin after the gall bladder removal? xxx

Mine is abdominal, yet undiagnosed after two years and the removal of the Gall Bladder. I now have Oromorph at home, but when it gets too much, I have to call the Paras. for the real thing and Entinox. This usually results in several days in hospital.
Will be back tomorrow
Julia in Derbyshire

may hope the results will be ok every test seems to have a 2 week wait for result now, glad you find some comfort in your bed, i too have the pillow and love it, ive got an appointment wed, its been cancelled twice due to doc being ill usually its a 2 week wait to see her anyway, i called earlier saying i didnt think it fair id had to wait a month so roll on wed, its the burning pain i really cant cope with it makes me want to scream, im so scared of taking to much morphine to numb it mayby she can give me something else hope so, i see consultsnt march 8th mayby he will have something new for me.
The bad dreams and nite mares are horrible just the other night i was having them and i know its going to last all nite i so nearly shouted down at specky to come to bed as i was scared lol xxx

Been at the hopital with Hubby today for a scan of his kidneys, result in about two weeks.
We have a memory foam mattress and yes it has been the best buy ever, also have a memory foam, shaped, pillow but can't always cope with that, have been a lot better sleepwise since being in a supported sitting position, trouble now is depending on how much medication I take, I have bad dreams, always somthing fallling and i'm trying to catch it, but what I am doing in effect is grabbing or he says thumping holes out of OH and he really doesn't diserve it, I promise, but I feel awful disturbing his sleep and am afraid he have me arrested as a husband beater!!!!!!
Bitterly cold here today.

sylvialn i really hope the assesment goes ok too, ive often wondered re the caescarian i had that a lot of my problems started , when coming out of hospital with my son, i had to go shopping carrying my baby cant remember why i carried him but i stupidly did then walked back with baby and shopping then went on to cook tea for a ex husband and daughter, i thought the pain would be gone soon, 4 yrs later after being in terrible pain in the bottom of my abdoman they took me in and sperated my bladder which had been sewn to my womb and spliced lots of adhesions the pain never went surprising what you learn to ignore and learn to live with after a further section , had same problems but my health really deterioated , ive often wondered could the differnt types of anesthetics and spinal taps done have damaged nerves and caused lesions that have lead to the ms, i dont expect it to go any further than a thought tho.
thanks may i generally have a good sleep drugs and memory foam the latter being the best thing ive ever spent money on.
Sylvia i meant to say on my oh it had been given a mri 5 yrs ago, his pain had got worse but he was being treated the same finally a doc sent him for a mri and he is now waiting for a op so i always speak up now and even if i have it written down lol.
Liz did you ever get around to getting a memory foam or did you have one , i know at one time a lot of us were discussing it, i couldnt be without mine love to you all xx

I'm lucky .... I don't have fm to add to my problems, and the bed is very comfortable.

In fact, being in bed is one of the places where I don't feel pain. So I usually manage to get 5 hours or so of solid sleep, then have to go walkies. If I'm lucky, I will then sleep for another 2 or 3 hours.

The bed is so comfortable that I will often lie there for an hour or an hour-and-a-half after waking up, listening to the radio, just 'cause I am so comfortable and more-or-less pain-free ..... and then I think that I really must get up, by which time it is 8:30 or 9 am!

I also didn't do anything one thing that made my back so bad ..... although the physio has said he would have loved to get hold of me when I was in my 30s (i'm now 70) 'cos he could have prevented a lot of deterioration with the right exercises. I've had to learn to use my core muscles ...... and things are much better when I do remember to hold myself in :)))

It was probably a combination of bad posture, plus the fact that I had a caesarean and fainted when the physio came to give me exercises to do after it . Well, she did have me lie flat on my back, no pillow, and then stand straight up right away. I should have known better than to follow those orders, but I did, and ended up on the floor! She never came back after that .................... so I didn't do the strengthening exercises that I should have done.


Ah well, we'll see what happens at the assessment tomorrow. They seem to think they are assessing my hip. I did have a hip x-ray late last year ordered by one doctor, and then I had a spine x-ray last Monday ordered by another. They will be able to access that spinal x-ray on the computer as they are part of the same complex (12 miles away but still part of it!!).

The problem was that I didn't seem able to make the first doctor understand that although I did have more pain in my hip, it was most probably being caused by the spinal problem. So he didn't order a spinal as well. Sure enough, that hip x-ray showed only minor deterioration, which was comforting news, and pleased my physio. The second doctor understood what I was talking about, and decided that it was time to have another spinal x-ray, it being several years since the last one.

It isn't/wasn't a desperate error ............. just means I might be being assessed for the wrong thing!


I hope that you all have a good night's sleep.



sylvia
xxx

I have so many different bits of me that ache mainly due to the fm and also to osteoarthritis, wear and tear in both knees, my ankles, and my neck and shoulders aren't good either. Too many years of carrying heavy shopping home or walking a strong puppy pulling on a lead while holding on to an energetic 4 year old with the other hand. Then too many times I moved heavy old fashioned wardrobes, and other furniture, about when managing the student lets, too hasty to wait for help and would manage by myself. Don't I suffer for it now tho?
Makes you so fed up when you can't do all you want to do, doesn't it?
Puss I think the stress of our lives has caused the fm or exacerbated it anyway. The pain would be easier to cope with if the fm didn't stop me sleeping properly - I would love just a couple of nights of refreshing sleep, can't remember the last time I woke up feeling energetic and ready to leap out of bed.

Take care all

Lizxxx

I hope everything goes well for you tomorrow Sylvia, like you the bottom and top of my spine are affected, six vertebrae at the bottom,four at the top, [pain in the left leg was thought to be sciatica at first, can't walk more than about five yards without stopping , pretend we are window shopping, can't turn head to either side, very , limited. Have to be in a sitting position propped up in bed, the pain lying flat gets too much on my back and if on my side which was my favourite position, my spine has no support, seem to have that problem sorted now though being propped up.

I hope both you and Puss have a restful night tonight and feel fighting fit tomorrow, at least for an hour.

may i slipped in some ice holding an electric fire i had loaned a friend whilst pregnant , im the same at the mo although only in my early 40s, specky has to do much more even though he is waiting for a op on his spine, my spare time is going to church reading and being on hear , i was brave earlier and made some pancakes for daughter and just for standing for 20 mins im now in chronic pain, but going in the bath in a min so will feel loads better after that, i still get up put my make up on even if we are not going anywhere that helps me feel better xx

We do some really silly things at times don't we. I remember over 50 years ago when I was expecting my daughter, I stood on a table to put curtains up, table tippled forward and I slipped, fortunately ,gently to the ground, lived in fear for the remainder of my pregnancy, not telling anyone what had happened, thank God she was born safe and sound. You would think I would have learned a lesson, it could have been curtains for me and the baby, and yet at 77 I still do daft things, think I'm 30 years younger, but get frustrated nowadays, so restricted, hobbies, i.e. cross stitching, knitting, crocheting and sewing, especially for dolls house size things are none existant at the moment, shoulders and arms ache at the least effort, and it takes ages to do a bit of vaccing, poor OH has been promoted to head cook and bottle washer.

thanks may for replying, one of my problems is my fault, in my 20s i was chopping wood for the fire with a huge axe, i swung it awkward and had a searing pain in my back, but with a fire to light and young children to care for i needed to get the fire lit, went to bed that night but woke with pain, couldnt get of bed next day pain was awfull, spent 2 weeks in bed with a potty.
about 15 yrs later jumping on the bouncy castle big adults one i bounced front ways which made my back arch till the back od my head touched my ankle, was running the pub at the time and just plodded on, this has caused a worn disc and stenosis of the spine falling off a table didnt help either , but my FMand MS are not my fault i dont think xx

Hi Puss, Accupressure is similar to Accupuncture but uses forefinger and thumb instead of needles on certain pressure points for different ailments. It is best to consult a trained person although certain small treatments can be done oneself with care. My daughter swears by Accupuncture but apart from being a coward, the thought of needles in my spine at the moment is a no go.

Hello everyone, I've had a bad start today but then it snowed again during the night and that and rain of which we have plenty, doesn't help. I have a drug named Zyndol prescribed which is 50mg of Tramadol and I take it 3 times a day, I was on Acupan which is mostly codene but this caused problems, I also have Movelat Gel which is an anti-inflammatory gel and I find very good.
This is all my own silly fault, 17th December 2008 was wet as usual and the front (and only) door I couldn't close properly when I came in so being the daft thing I am, I put my backside to it, the doormat went from under me and I landed with a crash on solid concrete in the entrance porch, couldn't move for a few minutes and at first my GP though I had damaged my sacrium and treated me for same. I can cope on the treatment I'm on and consider myself lucky compared to others

HI may tired eyes lol, what is accupressure?

thanks guys for telling me of your experiances, i woke this morning knowing it must of snowed as i have the ms hug at the moment (not after sympathy lol) this is the pain that really gets me down its like someone burning me with fire but if im still and doped up with morphine i can cope just need to eat lots of fruit for you know what lol, i sat here last nite needing to talk to others with pain, its ok going on the net speaking to others but i find it better talking with people i know on here hope no one minds xx
Hope you all get your pain sorted too xx

Good luck with the assessment on Monday, Sylvia. It's awful to be in pain isn't it but makes us realise how lucky we are against those who can only walk from bed to toilet or not even that far.

Our Mary has her op on Monday I think, unless something has changed, so it's a day for positive thinking for both of you.

Lizxx

I had several sessions of acupuncture last summer for bursitis in my hip. It worked wonders!

I'd never had it before, but I wouldn't hesitate to have it again, even though it costs a lot of money over here and is not covered by our health plan (unless the damage has been caused by a work or traffic accident, when coverage from WorkSafe or insurance may kick in).

I have deteriorating vertebrae in 2 areas of my spine. One is down at the base and affects my hips, especially the right one. If it gets aggravated, the pain eventually extends down my leg to my knee and my ankle. The other area is just above my waist .... and means that I can now no longer twist to look over my shoulder.

The pain can be worse if I do too much ................... or if the weather changes. I react almost immediately to atmospheric changes. That can be to rain coming in OR rain changing to sun.

I have physio every 2 to 3 weeks, and do exercises every morning. Plus I take painkillers ................... I have 2 strengths of over-the-counter Tylenol (which I think is more-or-less equivalent to your Paracetamol), plus a prescription-only Tylenol-with-Codeine for when the pain is too much for the others.


I find that the amount of pain that I can stand now is definitely higher than it was say 10 years ago ............................... so I think you do get used to a certain amount.


On the other hand ....... it can also make me crabby if the higher level goes on for too many days! It drags you down when it goes on and on.


I'm going for an assessment on Monday to see if there is any further treatment or care that I could have. But looking at the 7 page Assessment Form that I have to fill out before then, I have to say that I feel pretty lucky.

One of the questions is How Far Can You Walk? The possibilities are Unlimited, 6 blocks, 2 blocks, 1 block, around the house, from bed to toilet to bed.

I'm somewhere between unlimited and 6 blocks!

I can actually walk about one mile, and then need to take very great care how much more I do.


Take care



sylvia