Between the devil and the deep

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
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Between the devil and the deep

Postby dipstick » Mon Mar 26, 2007 12:56 am

I am quite clear that "exercise" is crucial to getting a good night's rest. If I am busy all day and then spend the evening relaxing.. I will be twitchy before bedtime.. and hopelessly demented for hours during the night.

However, as I suffer with arthritis in my knees and back... if I have had a busy day it HURTS to keep on the go all evening too!!

Ideally it seems I need to rest a good deal during the day ( but not sleep as that will mean not sleeping at night.. ggrrr) and then work all evening. As you can imagine that is a difficult arrangement as I have a job, a home and a disabled son who needs a lot of support and attention... mainly during the day of course.

Some days.. like today.. I have been on the go since I got up... haven't even stopped to eat.. just nibbled on the go.. since I have been helping my grown up son and his fiance to clear out and decorate the three rooms they will be occupying in our house so they can save to buy their own. Net result ( apart from a car full of stuff for the charity shop, a big bonfire still glowing at the bottom of our garden, and loads of boxes and bags in my study for me to sort out..).. I am NOT suffering from rls tonight.. but my pain levels with the arthritis are so high.. sleep is not possible... gggrr ggrrr and double gggrrrrrrr!!!!

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Postby becat » Mon Jun 04, 2007 10:16 pm

Hi DP,

I realize this has gone unanswered for some time, but today I have been rereading post and yours strikes home.

I have pain with my RLS, I'm so sorry that you have arthritis, pain is difficult to handle on an ongoing basis.

I do have other symptoms and can have "attacks" that leave me injured and unable to walk. Thankfully, I haven't had one in several months now. Since I have been afforded pain management, it's not even close to what I used to live through.

Since Jan. (2007) I have had an other health issue that has effected my lifestyle in whole. Pain is outrageous at this level and I've only asked once for help, to no avail.......doctors never talk to one another unless you make them. Arggggggg!

Anyway, my morphed RLS is now MORPHED again. I have gotten a new little area that seems to hold a family of bugs under my skin, right at the base of my neck. Yes, I've tried a million things and I know I'm happy it's not 24/7, but it's getting close.

My legs have gone from bad to worse, you know one health issue is never enough. LOL But add one that decides your legs need more thought is never fun. My legs make me think too hard about life. Honestly, I have wished all my life that I just had normal legs, you know the kind that weren't involved in every thought.

Ok, why I am answering this today.
Thankfully, in our area we have gotten rain for months now. Yeah, we are still on water rations, but the lakes have been on the rise and it's nice to see green again.
However, the weather and the humity, now adding the heat, is just making it hard to be human. My legs make me want to cry, daily, but it often comes out as just down right Bitchy. Never having the energy to do what needs to be done on a daily basis. If I take enough meds to help, 2 things are sure to happen.

1. I'm not allowed that much and I go over my prescription. That is bad and it just causes me trouble.
2. I'm just drugged and can't get anything done. Plus the next day is a drugged feeling and I'm slower than I normally am.

There's no happy medium here at all. It's just painful, all the time. I don't know if my doc would bump up my meds or make me change, I really want neither of those choices, but this has gone on too long.

I've isolated myself to avoid being mean to anyone, and yet I know it's a bad thing all around to do. I can't seem to help it though.
Today I have waited to take my meds for pain because I knew it was going to be stormy this afternoon, it's been exhausting to own my own body parts today.

I took my meds (cept for my bedtime meds) all at once after I got my errands and anything to do with the car and driving out of the way. Then I came home and took my meds as a bigger dose and waited.
In tears on the couch praying "kick in, let me get on with my day. I have so much to do and can't move, but have to. I'm getting nothing done, but I'm moving."

Well, they have kicked in and my pain level and itchy feeling is down to about a level 4.
It hit me that I wait for that break in the pain and symptoms to get on with my life. That is how I have lived most of the past 12 years. It wears me out.
I'm worn out. Period. I understand the grrrrrrrrr, I just wished someone could take it away and give me back the time I have wasted.
I keep thinking I'm here for a reason, if this is part of it........well I try gracefully to handle whats been dealt, but there are days that a pain level 4 is still too much.

I hope your doing well and I hope sleep and a pain free day has found you many times.


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Postby SquirmingSusan » Tue Jun 05, 2007 6:26 am

Oh Lynne, that is so terrible to not be able to do anything because of pain. It sounds like you really do need better pain management. Maybe time to talk with the doc?

Today was bad for me, too. Killer leg pain even after my methadone. The weather changes about every 5 minutes here, this time of year. We had lovely sunshine and 70s for a couple hours, followed by cloudy, followed by sunny, followed by thunderstorms, followed by cool and clear. :roll: It doesn't help with the pain at all.

Level 4 pain still seems like a lot to me. But I guess it all comes down to how we define the levels. It seems like they should have a chart correlating the pain levels to things like "to much pain to get out of bed," "too much pain to do chores," and "so much pain that I fell asleep because of the pain," which mercifully happens to me.

I hope you get feeling better.


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Postby KBear » Tue Jun 05, 2007 3:31 pm

DP- I agree with you, I know my RLS would be better if I was getting regular exercise and I am in the same boat as you (and Lynne), although for me it's plantars faciitis that is causing my pain not arthritis or RLS.

I just spent an outrageous amount of money for a pair of shoes that is the "top of the line" for arch support in the hopes that this will help.

In the mean time my feet hurt too much to exercise, especially on days when I have been busy all day. By the end of the day I can't do much more than put my feet up and pray for relief. (I have an appointment with a podiatrist on Friday and am hoping for some relief)

I love to garden but right now it's pretty much out of the question, except for pulling a few weeds here and there and wishing I had the energy to do more.

Link to the Mayo Clinic Algorithm: ... 907Crc.pdf

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Postby dipstick » Tue Jun 05, 2007 9:08 pm

Thanks for all your replies. No doubt about it.. pain is a killer.. and people just don't understand. My husband often says things like were you just too lazy to go in there and turn it off... yes I guess I was... hurting too much to turn round and walk back and turn it off.. instead of taking the two or three steps that lead to SOME relief by lying down!!!

Regarding the plantar fasciitis... I had that too.. for nearly three years... which is I am told fairly standardly how long it takes to heal. I made the serious mistake of not resting enough, of forcing myself to keep up with a fulltime job, my family and other commitments. It seems that through the wierd ways I was walking to avoid the pain I really accellerated the progress of my arthritis. I am telling you this to encourage you to get good treatment.. anti inflammatories really do help.. and if the over the counter ones are not enough ( which I doubt they will be) then see the doctor and get a strong presciption of anti inflammatories and if necessary other pain killers too. I would reccommend Ortho heel inserts for your shoes.. I found these the best.. you can buy them in lots of places including Cosyfeet ( ... EgodGmBnag).

Most of all.. rest... pace yourself.. sit down or lie down when it starts to hurt. I know it usually hurts when you first get up.. but once you are movin g the pain should receed.. but when it comes back.. rest. If you don't do this while this condition lasts you will make your long term pain situation worse.

My rls has been better recently... but mainly because I have had a lot of pain form other sources ( I have a leg ulcer to add to my joys at the moment) and being run off my feet with family illness. Hey ho.. at least the rls is better.. smile smile smile!!

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Postby becat » Wed Jun 06, 2007 2:58 am

Hey everyone,

Susan, I guess I've lived most of my life with pain, so level 4 is doable for the most part. Sadly it's just a normal thing. Yeah, about talking to the doc......I have few choices left until science catches up with me and so I don't push too often for change.

I do walk only 2-3 times a week now (last couple of months) my 3.5 miles at night. I miss it and it does seem to help me, but I had to start slowwwwww to get to that.
I mean I had a great excuse to start trying it and an even better excuse to start really small with how far. My hubby had open heart surgery two years ago. Half a block was how we started, as he pushed it higher so did I. So do what you can and if you can't do so when you can. Biggest thing around here, don't beat yourself up too much for not being, doing, and getting somewhere your not ready for.

DP, good news on the RLS front, Yeah! I understand about the family running you thin, hope that gets better soon. The plantars thing, I think that is what my husband has, it has to hurt......He never complains about pain and this one he does. We so need our feet to be healthy, sounds sily but it's true.

Kathy I haven't touched my gardens this year, that hurts in a different way. I need to play in the dirt and haven't either.

About the pain, there is an interesting article in Newsweek, this week (June 5, 07) that is all about chronic pain, and they are working hard to figure it out.
One thing it mentioned, that the pain dial (for lack of a better term) can be turned on and in lots of chronic pain cases......gets turned up and never gets turned off. Walter Reed Hospital is working on this and some new interesting ways to help those that come after us. Maybe for us too.
I bought the magazine just for the article.

And they did mention that they really don't have a chart, because what I feel you might sympathize with, like stubbing your toe, but you can't feel someone else's pain. So levels will always be personal.......Think Miss Jan told us that one a few years back.....hmmmm Miss Jan is before her time!

But I love giving the docs examples of your pain level by what we can and can not seem to do when we are in pain. Love that one.

I had a tired, but good RLS day......didn't need meds til almost 6 pm. Whoo hooo.

Ya'll take good care.

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Postby KBear » Wed Jun 06, 2007 4:43 pm

DP- Three years for your Plantars Faciitis to heal? That makes me sooo sad, for you and for my own prognosis :cry: . I have learned that I need to wear shoes with good arch support at all times, even when I get up to go to the bathroom at night. I am also icing my feet every night and staying off my feet as much as possible.

I started having additional pain from walking funny too. One foot is better than the other so I tend to favor one then started having more trouble with the other :x When the calves started to hurt too I scheduled an appointment with a podiatrist. I may go with "presciption" shoe inserts depending on what the Doctor says.

I also take a blood thinner so I am restricted on what anti-inflammatories I can take. Generally I'm allowed to take Tylenol. One day when I had to be on my feet all day I took them every three to four hours from morning until bedtime. Can't do that all the time with Tylenol if I want to keep my liver function, another thing I need to talk with my doctor about.

Kathy I haven't touched my gardens this year, that hurts in a different way. I need to play in the dirt and haven't either.

Lynne- it's so funny that you used the phrase "play in the dirt" I call it that too. I also call it my "therapy".

My husband often says things like were you just too lazy to go in there and turn it off...

This is one of those "teaching moments" if you explain to him why you needed to sit down, it may help him to understand. I know it is difficult and frustrating for our significant others to understand what we are going through.

I think my husband has reached the point where he is just worried about me and wants me to be all better. I think he is afraid I will always be like this or will just continue to get worse.

Link to the Mayo Clinic Algorithm: ... 907Crc.pdf

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Postby ViewsAskew » Wed Jun 06, 2007 5:31 pm

Kathy, just as an FYI - I talked to a doctor about the whole PF thing - I was in a stretching class with him. I had it at the time and he said he'd also had it. He said that though the doctors peddle those custom inserts, healing doesn't happen any quicker than if you don't use them. He looked at studies, etc. and concluded that most of the time, it is simply time that it takes. They have about ten things to try, and none of them work very well. I was about to buy the $500 inserts (my insurance didn't cover it) when I talked to him. I didn't do it and just used icing, gentle stretching, and rubbing on the area to stimulate it. It went away. . .in about a year or so.

Of course, that's just his opinion. My podiatrist had a completely different opinion, lol. I went online and did some of my own research. . .it seemed that the doctor in my stretching class was probably more right.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Postby KBear » Wed Jun 06, 2007 8:00 pm

Ann- Thanks for the tip, I have heard similar reports. My sister for example found that her prescription orthotics were really not much better than OTC shoe inserts. The trick (according to her) is finding the right insert for you.

I know that I do need better arch support and I need to wear shoes from the minute I get up until I go to bed. A contributing factor in my PF has been that I work from home so I wasn't wearing shoes most of the time. I have had problems with overpronation (turning inward) since I was kid mostly on my left foot but also a little on my right . It's no surprise that age and increased weight has brought foot problems back into my life.

I actually seem to be getting pretty good results with the outrageously expensive shoes (Finn Comfort is the brand name) so I'm going to be reluctant to spend another $500 on prescription orthotics. Hopefully there will be other options to help it heal faster and to deal with the pain.

Link to the Mayo Clinic Algorithm: ... 907Crc.pdf

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