Leg Pain

Sleuth · Post by **Sleuth** » Sat Jun 27, 2009 7:45 pm

I see many of you write about being pain. Until recently, I had no paid.

About two months ago, it became very painful for me to walk up stairs or up hills. My legs felt weak but, more important, my thighs would burn and hurt.

Since last week this pain how happens at any time. For example, I lie down for a few minutes, got up and walked around the room for a few minutes. All of a sudden, my thighs started hurting so bad that I had to sit down. I am sitting down and they are still hurting.

I mentioned this pain to my doctor last week. She said it is sore muscles from the activity in my legs while I'm sleeping. Now what can be done to make it stop? She didn't mention that.

I have been off all drugs, other than the ativan, until two days ago. I have taken 100 mg of Neurontin each of the last two evenings. The first night, it knocked me out but, then again, I hadn't slept more than 3 hours a night for over three weeks. Last night, it did nothing for me at all. I don't feel like taking it tonight. If a medicine is not going to work, I'm not got to take it. Who needs the side effects without the benefits.

I just don't believe how my symptoms are getting worse at such an accelerated speed. That is what frightens me.

My doctor keeps telling me that this is due to the high level of stress I'm under. She keeps saying that when I move into my new apartment, I will feel much better. For some reason, I don't believe her.

BTW, the apartment is still up in the air. I won't get to meet with the coop board until the middle of August at the earliest. They are the key to the whole coop purchase. They must approve the sale. I am very anxious about that. My whole life is in limbo right now with the apartment thing.

In am going to see Dr. Earley the second week in July. Perhaps he can give me a more definitive whatever. Boy, I'm feel very down about the RLS.

Dale

dogeyed · Post by **dogeyed** » Sun Jun 28, 2009 1:18 pm

Dear Dale the Sleuth,
Ohhhh, I know what you're going thru. I went out yesterday in the late afternoon and did a little yard work, and now my legs and feet are killing me. This is the main reason I don't like to do anything anymore. I was so glad to take my medicines this morning, becuz within an hour or so, they stopped hurting. I'm thinking in the summertime when we're more active, they kick up more, so perhaps that's you. I take Tylenol-Codeine #3 four times a day, only one dose increase in five years, so looks like you could try some of that! Eventually I'll need a stronger formula of opiate, but I'm holding out.
Gail the Dogeyed
.......

Neco · Post by **Neco** » Sun Jun 28, 2009 4:58 pm

I'm sharing your suspicions about your doctors reasoning as well..

Even when my RLS was full blown unmedicated, I never developed that kind of pain from constantly kicking, etc.. Much less burning sensations.

What else have you recently quit? If it was Requip or Mirapex (sorry I can't recall) then I would be concerned you're going through the enhanced RLS stage where quitting DA's makes it works for a few weeks.. If that's the case the only way to get relief from this is going to be a strong opiate like Oxycodone or Methadone more than likely..

Keep your thoughts straight and write down everything your doctor has told you, and then any less than stellar feelings about the explanations given. Give Dr. Early every bit of information you can about what you were taking, how long you've been off it, that these new symptoms are now appearing, etc..

Aiken · Post by **Aiken** » Mon Jun 29, 2009 12:39 am

It may not be moving or kicking. You may be stretching, straining, or flexing in your sleep. Think of it as jaw clenching for your legs. The strain, or perhaps resulting cramps, may be causing your legs to burn the next day.

For what it's worth, I get this sometimes, usually when I'm undermedicated.

Sleuth · Post by **Sleuth** » Mon Jul 06, 2009 5:45 pm

I now have the leg (thighs) pain every afternoon no matter what I do.

If I lie down during the day, even for a few minutes, I have the leg pain when I get up.

Walking up stairs or hills is agony. My thighs are on fire.

I have not taken any medicines for about a month now, so this is not getting over that.

My legs are very weak now and walking is hard for me. I used to walk miles each day. It was my therapy.

The RLS symptoms are just getting worse and worse at a breakneck speed. I am very frightened.

I am going to Johns Hopkin's tomorrow to see Dr. Earley for a consultation and, hopefully, an iron infusion. That has me very nervous as well. The thought of flying freaks me out because my RLS acts up now after sitting for only a few minutes. Whenever I ride on public transportation, I have to get up and stand for the while ride. If there is turbulence or we're stuck on the runway, I will not be able to get up and stand in the back of the plan. I plan to do that for the whole flight.

I am also nervous about what he will say. I am in a very bad way emotionally. I am not expecting miracles but if there is no relief at all when I leave, I will be even more discouraged.

Dale

Post by **ViewsAskew** » Mon Jul 06, 2009 7:51 pm

Dale, I wonder if you could email him or write to him prior to your visit. At least for me, when I'm in a bad place emotionally, I don't always communicate everything I want to in a way that the doctor can understand or grasp. I leave unhappy because he couldn't read my mind and I couldn't make myself clear. Maybe if you can articulate your concerns and worries and needs prior to the meeting and send it to him, you might get an outcome closer to what you need.

SquirmingSusan · Post by **SquirmingSusan** » Mon Jul 06, 2009 8:33 pm

RLS does not cause weakness in the legs. I hope that you get some answers about that.

I agree with Ann - find some way of writing out what you want him to know about your symptoms. Email, or even just hand write a list that you can refer to.

I hope your trip is tolerable and you get some good help from Dr. Earley.

Post by **Polar Bear** » Mon Jul 06, 2009 9:14 pm

I think that is a fabulous idea, email the doc with exactly what you want to say regarding your symptoms. That way you can read and re-read it, edit it, and make sure all your information is in the email.

Best wishes during your journey. Once I had to do a 9 hour flight from UK to west coast Canada. I was undermedicated and miserable. I can assure you that on the return journey I had at least double the dose, plus +++. and it will never ever happen again.

I don't know how long your flight is and all I can say is if you have to be totally drug free for your appointment then keep walking/moving/walking.

clarkgriswald · Post by **clarkgriswald** » Tue Jul 07, 2009 12:23 am

Dale,

I’m sorry to hear about your RLS is bad. And I think being in between apartments is phenomenally stressful. It feels like you can’t address anything else in your life because you don’t know where you’ll be living. I exercise almost every day. When the RLS gets bad I don't sleep. When I don't sleep my body doesn't recover from the previous day's workouts. I also feel like my legs and lower back work overtime at night when the RLS is bad. My legs burn and I get winded even walking up the two flights of stairs from the parking garage to my office. If the RLS is really bad, it takes a few days to recover once I start sleeping again.

I made the mistake of being under medicated on a flight once. It was a long flight - from London to Los Angeles. It was a long 11 hours. Summer is a good time to fly the mid Atlantic seaboard. I think you are much more likely to experience delays in the winter.

I’ve also recently experienced my symptoms suddenly getting worse. That combined with uncertainty over a living situation is a lot to deal with.

I think organizing your thoughts in an email is a great idea.

I hope your flight and appointment go well. And I hope you find some relief.

Post by **ViewsAskew** » Tue Jul 07, 2009 2:26 am

Just wondering....is there a train you can take? It will take longer, but I imagine you'll have a LOT more flexibility in terms of sitting/standing.

Sleuth · Post by **Sleuth** » Tue Jul 07, 2009 3:55 am

The flight is only a bit over an hour. I thought of the train, but that would mean standing for many more hours. Other than some Ativan, I will be medicine free. I'm wondering if your symptoms get progressively worse if you are not taking medications.

I can always return by train. If getting to and from the airport is a hassle, I might consider returning by train to avoid that.

I did not make a return reservation because I'm not sure when I'll be coming back. The procedure is done by another department, so his office wasn't sure it could be arrange in a day or two. I reserved my hotel room until the end of the week. Even if I have to come home, I may stay a day or two just to get away. I haven't been on any sort of vacation for three years. I love staying in hotels. I particularly chose a nice one with all the amenities. It is just a block from the harbor, so I will a lot of places to go if I stay. Heck, if nothing else, I'll get a good crab meal, although I don't know if I'll have enough nerve to sit at a table by myself with a bib on smashing crabs with a hammer. :oops:

Oh, I made a word processing list on my computer. Every time I think of something I've added to the list which I will print out this morning to take with me. You all mention email which I find funny. I'm from another school. I wouldn't dream of doing this by email when I can do it in Word and have a nice hard copy. As you can see, I'm being dragged into the 21st century. :roll:

All is not well on the new apartment front. The seller is giving me a lot of problems so the contract has not been signed. Even if it is, I have to be approved by the Coop Board. That has me off the wall. I have to complete a 42-page application. Then I have to add exhibits up the gazoo. When this is completed I have to submit 7 copies and then be interviewed by a six-member board. I think getting into the CIA is easier.

I will be sure to let you know how it goes. I know you're all rooting for me.

Dale

SquirmingSusan · Post by **SquirmingSusan** » Tue Jul 07, 2009 8:26 am

All is not well on the new apartment front. The seller is giving me a lot of problems so the contract has not been signed. Even if it is, I have to be approved by the Coop Board. That has me off the wall. I have to complete a 42-page application. Then I have to add exhibits up the gazoo. When this is completed I have to submit 7 copies and then be interviewed by a six-member board. I think getting into the CIA is easier.

Oh my gosh!!! :shock:

I think you're right about getting into the CIA. I've never heard of anything like that. Aren't there privacy laws and anti-discrimination laws that apply to buyers and renters?

I hope you have a good trip and this housing thing works it's way out somehow in your favor.

Post by **Polar Bear** » Tue Jul 07, 2009 8:48 am

Sleuth, don't forget you can always attach your word document to an email to send it.

And you always have a copy of your email in your sent box.

However, if you are not familiar with emails you may need a little guidance for a time or two.

This sounds a lot of administration with regard to changing apartments. Perhaps all this vetting means that you will find good neighbours

cornelia · Post by **cornelia** » Wed Jul 08, 2009 3:01 pm

About weakness in legs as part of RLS: dr B says (can't remember where, but it is in one of his patient's files on the Internet) that weakness in legs can be a part of RLS that is not medicated adequately. I myself notice that sometimes when my meds start losing their effectiveness.
Corrie

Sleuth · Post by **Sleuth** » Wed Jul 08, 2009 6:46 pm

I met with Dr. Earley yesterday. I am having the iron transfusion tomorrow morning.

He believes the leg pain is Myositis. This is not good news. It can only be treated with heavy-duty steroids, physical therapy and rest. My RLS symptoms make resting impossible.

The leg pain has become so severe that I can barely walk anymore. I am in severe pain when walking and often when sitting as well. This is very hard for me to accept because I am used to walking 2-3 miles a day at least. I love to walk. This all came upon me in the past 6 weeks and has escalated to the point that I am unable to walk.

For someone who was frightened of taking RLS medications, you can imagine how I feel about taking Pretisone.

If I sound down, forgive me. I am all alone in a hotel room in Baltimore with nothing to do but think about the new bad news. I'll be going home tomorrow night after the IV.

Dale