h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

OK, the results of the X-ray came back negative. That means there is nothing wrong with the bones, so I don't know what the problem is if it's not muscular. Ligaments, perhaps? My GP is referring me to a physiotherapist, but there is a 7 week wait. Don't know what the physio would do about my hips, but they may be able to suggest some exercise that I could do even with MS. I really need that.

The camping holiday was OK, although I did feel a bit guilty leaving hubby to do all the work. It was nice to find he was able to pitch our tent on his own. It's a frame tent, and I was worried that the size and weight of things would be a bit much for him. He said it was easy, though. Showers were a bit of a trial. The site we stayed at had no disabled facilities, so showers had to be taken standing up. I then had to walk back to the tent when I was already tired. I didn't sleep too badly, though, and even managed to visit some 'places of interest' - a Victorian workhouse, Hardwick Hall and Calke Abbey. We did the last two on consecutive days (Sunday and yesterday), so I'll need to rest for the next few days. Walking back to the car from Calke Abbey was as much as I could cope with. But I enjoyed everywhere we visited, so it was worth it from that point of view.

So it looks like camping is still possible, for the time being at any rate. We're off to Minehead in 3 weeks, but they don't have disabled facilities, either. We have decided to be more particular about *when* we go camping. This time our holiday coincided with a Bank Holiday weekend and a half-term holiday. Everything was fine until Friday, when people started to arrive from Nottingham and Sheffield (the nearest large towns) with their kids. Some families were fine, but there were some who allowed their kids to play games and ride their bikes around the tents. There was more than one occasion when we had to ask the kids not to play ball near our tent and car - both were hit more than once. Don't get me wrong. I don't dislike kids and have no objection to them making a lot of noise while they play - as long as they play in an appropriate place. Hubby says the kids actually spoiled the last few days of the holiday for him. Fortunately we were off-site for most of Friday and Sunday, otherwise I think he'd have snapped. In fact, the kids were so annoying I'm off to post on the P.U.D.D.I.N.G. pages.

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i don't think a xray would detect anything to do with muscular ,you need mri scan for that .

What I meant was, I *know* it's not muscular - it doesn't ache more when I move my leg. So if it's not muscular and there's nothing wrong with the bone, what else is there?

could be something to do with the arteries and veins etc, have they checked .

And general nerve conduction, this week i have spent quite amusing in an odd sort of way,many times watching my legs wake up. It's fascinating to actually see nerves twitching along a line when you can't feel a thing, and waiting for the agonising moment it turns into amazing crampy spasm stuff!

I time myself to see how long i can hold out before crawling out of bed "ho hum, wouldn't it be nice to sleep?"

Great that the camping holiday went OK; getting away from stuff is a great reviver.

zdt

I am getting bloody fed up with the restrictions that are increasing daily. The stupid stuff like the fact i can't bend down properly any more, so can't damn well access kitchen cupboards;just finally managed to crawl around & discovered i have loads of stuff on bottom shelves, here's me been spending precious cash buying the same things over again, simply 'cos i didn't know it was in there!



I am desperate to shift furniture around to make daily life easier, also clean the bloody floor properly; i HATE living in grot! But am reduced now to pressganging friends into coming and helping me; i simply cannot do it any more.

I have asked, begged,pleaded, for a home help, just one hour a week would make all the difference, just for the heavy bending/hauling around stuff but no, not unless you pay for it. Totally impossible on benefits. I think this is an inceredibly shortsighted policy, with just a little help i can stay independent, if i end up having to go into some kind of sheltered accomodation, it will cost the government loadsamoney....plus i will be miserable as hell.

Maybe that's what they want? So either i quit the country (& go where????) or move in with family (haven't got any!!!) or top myself, thus solving the problem nicely & totally reducing the cost of keeping me alive.

zdt*not a happy & taking far too many pain meds*

I know exactly what you mean. The hip problem I reported some weeks ago is still there. It's worse on some days than on others, but basically I can't bend over 'cos that aggravates it. Doing any task below waist level is a problem now. That covers everything from fridge and freezer to oven, to laundry (getting out of the laundry basket, dealing with washing machine). I can only clean the bath if I kneel on the floor. I've told hubby I can manage the bathroom sink, but that's more awkward, if anything.

At first it was mainly my left hip that was the problem, with my right hip only complaining if I put too much weight on it while trying to keep weight of my left hip. (If you see what I mean! ) Yesterday my right hip started up for itself. I couldn't sit or lie comfortably and standing for any length of time is not an option.

I guess I'm lucky to have a hubby who has offered to take on the housework that I can't manage. (Nowadays that's most of it.) We couldn't afford to pay for a home help, either. In fact, it's probably just as cheap to get in a cleaning lady as it is to pay social services to do it. I can't afford to leave the country - I'd have to pay for my DMDs anywhere else. I'd hate to have to move in with my mum (or have her move in with me, for that matter). No way could I live with my mother-in-law. So I'm begging hubby to take care of himself as I can't afford to lose him!

Yup; invaluable!! I am sure he has loads of other reasons to be invaluable to you but certainly having a nice strong helpful man around is a blessing.Wish i had one!

What i have tried to do today is sort out all my jars (i have loads!)and wash them & will decant as much as possible all the stock cupboard stuff so that once the romm is rearranged, they will be accessible at waist level. It's going to make it even more cluttered in here (living room & kitchen/eating area all in one room) but at least i will be able to get at stuff.

I get so bloody tired, i think having a constant background of pain makes you like this; especially when sleeping is difficult. I can't seem to find a comfortable position any more, if i get into one that's better for legs, the back goes, so i switch, then leg cramps, try another one & wake to find my shoulder has gone into hyperspace! Now, my right hand is playing up, if i want to carry on with computer i am going to *have* to take yet another painkiller.

Which i just have. Probably overdid it today, though "normal" people would think it's just ordianry stuff: went out for essential shopping, emptied cat tray, made a & meal for the good mates who are helping me tomorrow (i hope!!!), started washing the jars & sorting boxes, watered my plants....i feel as if i have run a marathon!

Oh well, as we all know with these things, some days are better than others, tomorrow will be grim 'cos inevitably the effort of trying to get the place sorted then entertain the helpers when all i want to do is collapse, will be bloody difficult. But worth it in the long run, i *have* to accept i now need to modify my home in order to cope with just living in it.

What the hell i am going to do when they cut off my benefit in 6months time, i really don't know. If i can't cope with daily stuff now, how the hell could i work as well?

Worried about abbi, who hasn't been on for ages, i know she is finding it progressively difficult to use the computer.

zdt*sorry for whinging, but better out than in!*

Right, well it's finally happened. Fallen over yet again & damaged leg to such an extent i am totally incapable of getting to the shops (even moving from this chair to the sink causes pain that reduces me to tears.)

Nobody available to help me out.

If this is the shape of things to come, i want none of it.

It is impossible to be handicapped unless you have a helper & i don't. I have tried & tried to be independent up till now, but i have reached my limit & it seems there is no help out here. Presumably we just starve to death till somone notices the smell?

Great fun. Hope the rest of you have a bit more support than this.

zdt

F105873?thread=961940&latest=1

Good to read of some improvement for you Terri on the above link!

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CHeerful D I know what you mean.
I wish my hubby would take more care of himself.
He is a heart attack waiting to happen.

Not having anybody to help me if he gets into trouble would be bad but a worse thought is that I could not help him much after all he has done for me!
It would be awful for both of us

Smudger knows what it is like to have a terrible back with his wife very ill and needing his help. Thankfully they have gotten some asistance such as scooters and autos that make mobility for his wife possible. He could not keep pushing a wheelchair with his back.
They ( most of us)are much happier when getting out some.

Smudger did solve the problem of my hubby not being able to hear me when I am being pushed by him in the chair. I cannot turn my neck to talk and his hearing is poor. Earbuds/mouth piece sets that cyclist use to speak to one another.


We tried walkie talkies first ,they are good for longer distances like flea markets and restroom breaks, large indoor spaces, other peoples homes...

I rarely get out any more.
I need more mobility options for my mental health. I wish I could get a scooter tomorrow.
Maybe a year or so. I hope.
That IS my next big wish, some added independance (choices without directing)even if we are together on the same nature path or activity.

I've noticed something over the past week or so. One problem I've had to deal with for 6 months is painful hips. About 10 days ago I got flu and the pain went. At first I thought it was the flu 'remedies' 'cos they contain paracetamol, although paracetamol on its own doesn't usually do much for the pain. Then I came off the 'remedies' and the pain stayed away. Now I'm recovering from flu and the pain is coming back, although not as bad as it was - yet. Has anybody else ever experienced anything like this?

The annoying thing is that I was offered vaccination against flu as I'm classed as 'at risk' - I have asthma and it's best if people with MS don't get flu as it can prompt a relapse. By the time I got round to doing something about it, the GP had run out of vaccine. You could say I've done my immunization the hard way. The flu was bad enough, but the past few days have been one long asthma attack. Next year I'll make the appointment as soon as I get the letter!

Further to that posting, my hip problem is now back to almost as bad as ever. The fact that it went away while I had flu makes me certain it's auto-immune system related. The only question is: Is it an MS attack that's refusing to go away, or is it something else, like rheumatoid arthritis? I know that research has shown that a particular gene is related to susceptibility to both MS and rheumatoid arthritis (and myocardial infarction - heart attacks, to you and me!). I'd just love to know what the problem is.

It's really difficult to know what is causing what isn't it? The auto-immune stuff really clouds the issue 'cos if your body is over efficient at gobbling up nasties; you end up with arthritis/asthma/MS/ME /allergies type stuff; so in theory would be less likely to get infections.

I think that's the case with me; i am not "allowed" to have flu jab; but whilst all around me drop like flies with colds & flu i simply get snuffly for a day or two then it goes. Don't get tummy bugs either.

I just had MRI scan on the Bloody Knee & apparently show no signs of osteoarthritis bone thinning stuff; which is a poke in the eye for all those who said "oh, vegetarian, hmmf, low calcium, you wait till you reach the menopause, you will crumble apart!"

Don't underestimate paracetomol as a painkiller; i have prescription for soluble paracetomol & while it doesn't remove pain completely, it keeps it at a level which is bearable most of the time. It's probably less harmful in the long run than ibuprofen i think; so long as you don't overdo it.

Anyway, hope the "Festive Season" goes well for you; try not to be tempted to overdo it, very easy at this time of year (and being constantly cold doesn't help does it?")

zdt

I think you are right about the hip pain returning CD

I hope you manage a Nice Christmas, if you celebrate

Terri is right about the Holidays and how easy is it to overdo.
The added stress of a changing schedule alone, is normally not helpful.

The same time the weather is changing or too cold.
Not the best start to a good day but sometimes they Eek through in spite of all.

I have some hope for the latest experiment though it is early yet.
I need some hope. The Dr also mentioned the state board of health has approved some version or portion of marijauna tea as an approved medication. He has one patient on it and another getting the paperwork through. The first patient had significant reduction in pain medication.

He said I would be a good candidate. I would much rather save my organs as long as possible so I may consider trying it.
I hate the thought of going to the last resort as it stands because what will I do in 10 years if I am still around?

I have the MS-like synptoms from the lighting thining my myelin and genetic spinal arthritis. I think it is sort of unusual that only one condition exists after decades. Family history is always a good place to look. I did not get mine until a few years ago. Unfortunately not a lot of progress has been made in treating this sort of RA becaus eit does not respons like others. Since I have had polio and TB as a child I cannot even try a couple of the more successful ones.

It is well worth seeking out a Dr specializing in auto-immune and arthritis/connective tissue problems.

I was diagnosed with ME first ( first was CFIDS(CFS) then FMyalgia in 1984. I was number 350 abouts in the US once they started keeping records and tracking it. There is a slightly higher risk among those persons also having MS and or other combinations of conditions in the auto-immune categories. Many FM-CFS-ME are as yet, undiagnosed auto-immune diseases. It happened the majority that started out in the studies I was in. After 20 years they either got better or got diagnosed with other conditions for which their symptoms also applied.

Hmm this did not show up on my postings.

I try to check here about once a week because it is not the first time. I have seen others complain about that recently.
Could all be sailing along now and I'm having h2 weirdness?

It is weird to talk about some medications since the laws vary in countries. I hope it is Ok to clarify For instance a drug *V is legal prescription in US where I am, but not UK. I have been able to replace my V with a relative of gabepentin which is helpful to many people with nuerological problems. It was a disaster the last time due (then brand new) severe side effects. I hope I can up the dosage but if not this would be much better than V in the long run.

My doctor has assured me the above post mentioned is completely legal as opposed to smoking M in the US. This is a state that passed laws to Ok it though it's not legal due to the Federal Laws over ridding the states. So it is a serious question. My doctor would never suggest that. He hates that I smoke ciggies ( me too)

He is not so positive about many of the experimental drugs for my particular mix of situations. One time he said OH I don't know.....I would have not suggested that (Cymbalta) The rest he has just said you are well informed and experienced so just watch carefully and stop if you have any doubts, then call. So far they both have agreed with decision to stop which is nicely reassuring Dr-patient relationship wise. I sure hope I can hang onto these two docs for a long time

I do not know if it is a component or a mixed herb tea or what. The doctor mentioned there have been no reported side effects so far. I saw a tea mentioned somewhere on the site for severe pain. Wonder where that was and what country it is also possibly used legally?

The doctor had a Med student again
I always learn more listening , although he is an excellant talker and has patience for questions. I also take the opportunity to teach the Med student something if possible I miss working in hospitals and being a part of their education at times.
This student seemed like a good one as opposed to some who seem arrogant, some disinterested as if they do not want to be a Dr. They are not as sleepy as interns! It is a good thing they limited the amount of hours they can stay on duty a few years ago. It was needed!

shew! Definitely typed out now


I'll rise again!

Go back to pad base & recharge!!! Just sent you an email but DON'T feel obligated to reply; or if you do; keep it short & sweet as it were.

zdt

I guess part of my problem is that I don't know enough about auto-immune conditions. I know about MS (I have that), rheumatoid arthritis (my dad had that, and he had it bad!) and lupus (a friend has that), but I know there must be others. Somebody suggested that it's unlikely I have RA as that usually starts in places like hands and knees, not in the hips. That may well be, but I'd just love to know what it is. I guess I need another visit to my doctor to try to get referred to an immunologist - if there is one in the area!

It is worth checking out your hip pain.
The most likely is a muscle -nerve connection with the MS but it is possible some arthritis may be present that you can tackle.

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This is a recent link in the New York Times and it may not be reachable for you. It has a lot of the basics or credible links.
http://topics.nytimes.com/top/news/health/diseasesconditionsandhealthtopics/arthritisandrheumatism/index.html?inline=nyt-classifier


Nuero and Arthritis- Rhuematology have large associations and their recommended links are generally good for information.

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RA and Rhuematology ( normally treat ME and FM too)include easily a hundred different labels.
Not all problems show up on tests.
*Arthur is one thing that shows well on old fashion xrays
Enough to get attention and a plan started.

Hip is a common spot for problems to start.
It's usually osteo arthritis which is not normally as destructive.
I forget at the moment I do not believe it is auti-immune problem but wear and tear.
Hip pain can also be your back and/or nerves, or brain signals going to it.

Hip problems are shockingly common here, for both active and the not as healthy. It is apparently a surprising new stat to the medical professsion. The younger baby boomers are having hip replacements at a record rate usually due to oseto-arthritis.

Sometimes can be avoided IF you only know what type you have and follow the best advice *early on.

Hard to pick the best treatments when you combine ailments but luckily or unluckily enough many auto-immune problems have the same recommendations. None are magical to most. They can slow things down and/or make you more comfy over the long haul.

Um do you have a good bed Cheerful D?

I finally had an appointment with a physio-therapist this week. She had a good reason for not returning calls at the end of last year - her mum had died. I know from personal experience that everything stops when a parent dies.

Anyhow, she checked my balance (which was as good as it ever is) and asked loads of questions about my condition, MS as well as hips. She actually listened, which some of them don't, apparently. She also did various things to my legs, moving them into different positions and asking whether any of them hurt. They didn't, which she said is a fair indication that the problem isn't arthritis. She reckons it may be a problem with the muscles in the lumbar region of my spine. She taught me how to do a 'pelvic tilt', which helps those muscles.

She said I should be fine doing yoga and tai chi, and also recommended Pilates if I can find a good class nearby. Now here's the good bit. I was planning to exercise up to 6 times a week. She said no, I should only exercise twice a week, and then only for 10-15 minutes. I know it's better than nothing, but it's not going to help much with my weight loss.