Trouble with symptoms again---leg weakness

[Guest Julia59]

Sorry I haven't posted much lately---i've just been laying low and saving all my energy to deal with my increasing symptoms and my brother Joe's Cancer.

Joe will need 6 full months of chemo---the first five weeks will be every week for both chemo and radiation, and then chemo every two weeks for 6 months. He had his port installed Monday.

I gave his wife a birthday party Saturday at my house. I made chicken enchiladas and my niece--(Joe and Debbie's daughter) came to help me. I had to sit on the kitchen floor to do some of the cooking.

It was really rough---not my usual potsy stuff----lot's worse. I didn't realize how bad until I was done, and finally sat down to relax. My spine and legs were in so much pain I couldn't speak. My Dad said I looked white. I couldn't eat what I had fixed. My niece rolled most of the chicken enchiladas.

At least everyone loved them---I really didn't know what I was doing, I was just winging it. I also made a pot of chili---that was easy, and didn't require much effort. My husband helped with most of the cleaning.

I have noticed the weakness and function in my legs is getting worse. It is very difficult to walk due to the numbness and weakness. Now they will vibrate and get shaky when I use them for anything more then putting around the house---this has been more recent.

The middle of my spine feels like it is splitting in half, and of course I have the usual pain in the cervical spine and base of my skull. I'm going to have to buckle down and find a pain killer I can tolerate. I am not able to tolerate narcotic pain meds well at all.

I have dealt with pain so long---I thought I could continue to deal with it, but it's wreaking havoc on my life.

That on top of the rest of the other symptoms is just putting me over the edge. And the Docs can't seem to agree on what is causing what---and every time I go to see Dr. Grubb I got too much to put on the table for him.

I have also noticed my thumb nail is deciding to split from the bottom up---right in the middle---a verticle splitting. I am low in vitamin D---less then 7---when it should be 25-55. They gave me prescription vitamin D, put it seems like I can't tolerate it. Made my hyper adrengic symptoms worse.

But then again it may have been that way anyway, but I didn't want to take a chance of adding further problems, but yet I can't continue to be this low on vitamin D.

I just can't get over how bad my muscle weakness is---even my arms. All my joints ache----and when I stand up my left foot has a bone on top that tries to go out of place and it's painful. I know Dr. Heffez the NSG in Milwaukee said I have myelopathy from long standing cervical spine stenosis, but I just can't help but think there is more to this picture.

My system just doesn't feel right. I'm no longer able to drive accross town as i'm afraid I won't make it back. Once I get to my parents or any other part of west Toledo, i'm wiped out just from driving there. And now i'll get there horrific adrenaline surges--(not often)---not these big ones, but When I get them my heart just feels like a fish flopping around in my chest. It seems to more pain and fatigued I am in----then those horrific surges try to come out.

Every morning my BP has ben 80/50s---or 70/50s and even 60 over something, but I have noticed my HR doesn't seem to go up much to help bring up the BP. When sitting my BP is usually 95 to 100/60---pulse in the high 60s and low 70s---pulse only goes up to high 70s when I stand. This is so odd.

Then other times I have tachycardia no matter what postiion i'm in---even sleeping. The RN--(harry) in Dr. Grubb's office downloads the implantable loop recorder and said I even have a high heart rate in my sleep.

This is why I haven't had to courage to get the bone scan done or any other testing---i'm so afraid of getting worse----but yet I have to have the tests to help me get the answers. I'd rather have needles poking me all day---it's the stuff in the needles that scare me. They could stick me in an MRI machine---it wouldn't bother me that much---I just fear anything injected into my body. Dr. Davis the psychologist is working with me on these fears.

I'm just really getting concerned with this leg stuff-----I'm really struggling to get around---- the leg weakness which is always there now----then the crippling fatigue on top of that. The OI has been an issue too.

Sorry---just had to vent---and discuss my fears on losing the functions of my legs.

Julie :0)

[dizzygirl]

Julie i am so sorry that you are feeling so bad.. I'm sending you some virtual HUGS!

and I hope that all goes well with your brother.. I wil continue to pray for you and your family.. Pls talk to dr. g about everything.. I think that he would want to know.. maybe he can offer or point youin some direction for help.. I dont beleive that he would want you to be suffering so ..

hang in there and take it easy

Luv and hugs

linda

[Jacquie802]

Hi Julie,

Do you have a wheelchair around for the times when your legs are in pain, etc.?? I can relate with you about taking pain meds/narcotics. Usually they make me sick (only had them 2 times, once for my nose surgery and the second for my wisdom teeth removal).

I have noticed how giving everyone is on this site. We know how crappy feeling we get, but sometimes others don't...it was selfless of you to put together a party for your sister-in-law, even though you aren't feeling good. I agree with Linda that you should call your doc., because you shouldn't have to suffer with all the pain. I hope you get a goodnight's sleep. Take care.

Jacquie

[Guest CyberPixie]

I can relate (big hugs) I too have awful pain and stiffness. My spine feels like it's going to break, my pelvis is out of line and so much pressure and pain there and all down my legs. Mine, I know is to do with the EDS. I also have weakness and pain all down my arms, I only have to cough (and when you get 20 pots choking fits a day it's not good) and the pain and weakness shoots down my arms so bad it makes me cry.

Just want to make sure you've had your potassium checked (sorry all my posts seem to bang on about it lately but it's made a difference) it's helped with my weakness.

Use some pure essential lavender oil on your painful bits, it does help, heat packs, cold packs, get a hand held massager. Get a feather bed mattress topper. Maybe some chiropractic treatment if suitable for you.

Vitamin E helps with muscle pain and any inflammation. Omega 3 helps too.

Hang in there.

[Guest Julia59]

Thanks for the support-----it helps me through these troubling times.

What bad timing for all this to happen. My big concern is my brother---and I am disappointed that I am not able to help him or his family as much as I would like to.

CyperPixie---thanks for the tips---I like cold packs/ICE the most for controlling the pain. Today when I took my son to lunch---I took and ice cube from my ice water and rubbed it on the back of my lower head and neck. It was a quick fix and got me through lunch---but boy did I crash when I got home.

Jacquie----a wheel chair might be a reality if I want to get out more---I just hate the thought.

Thanks for the HUGS Linda---

I crashed so badly today that I asked my son to hang on for a few minutes when we got back to my house----it was sudden and rough---I don't know what's going on, but the thought of seeing another doc----oh i don't know---I just don't want to go there....................... I just don't think Dr. Grubb of Bev--the NP can help me with any of this. It's my back/neck/lower part of my head---it's just on fire if I do anything---even going out to lunch. I'm dropping everything, it's just a mess. I'm in pain most of the time, and it spreads to my chest---and get this---remember when I would talk about slow bowel motility, now they are working too good. I don't know weather to be happy or what about that.........

Thanks Again-----------

Julie :0)

[michiganjan]

Keep on hanging in there, Julie. I am thinking of you every day.

Even if Dr. Grubb can't help with the EDS issues, could he perhaps help with the blood pressure? Are you currently taking any meds to help raise blood pressure? Is ithere a possibility of adjusting the dose?

Who can help you address the weak legs issue? Is it possible there could be another cause besides the EDS?

Who prescribed the vitamin D? Could you call him/her to report that you can't take it and ask if there is another form that may be better tolerated or another way to get that level up?

You are so good at doing everything that is needed to get help, Julie, so keep on with it--even when you are feeling discouraged. You are so strong and brave, that I know you will get through this. Keep on searching for answers until you get the help you need.

You have my phone number . . . call me anytime.

Hugs,

[gdomaracki]

I know what your going through all too well. Just keep moving around, at least that's what they tell me or it will only get worse. (orthostatic tolerance, that is) And the tacch. at night is my least fav, it makes me feel as if i'm running a marathon. I can NEVER get enough sleep. Best of luck to you, its good to know tho that there are others out there dealing with the same symptoms as me. I'll be prayin' for you.