They always say, "be careful what you wish for". But, sometimes, I wish I had SOMETHING doctors and people could SEE so they would KNOW there's something terribly wrong with me and I would be believed.
Here I sit, at the computer, AGAIN. It's 4 am and I haven't truly been asleep all night. This is after taking 1.5 mg. Mirapex, 1.5 mg. Klonopin, 5 mg. Gabritil, 12.5 mg. Ambien. Tonight, it's raging RLS. Last night, it was PAIN--I woke up moaning, hubby said I'd been moaning for quite awhile. Then, it gets so bad, I can't stay in bed a second longer. The sheets hurt, it hurts to turn over. Where is the train that ran over me? And, many nights, it's both RLS and the horrible pain--a pain which is very different from the pain of RLS.
I've been dxed with RLS, of course, and PLMD. But, I've also been dxed with fibro and now periphernal neuropathy. But, there's a problem. Three doctors--a rheumotologist, a neurologist and my general practioner. None of them agree on what's really wrong with me, OR none of them thinks there isn't THAT much wrong with me. I don't really know because they refuse to give me my medical records. I know I have a legal right to them. But, unless I make a terrible scene in the doctor's waiting room, I'm not going to get them.
Did you see any pain medication listed in my personal pharmacy? I have to beg and plead to get any and when I DO get a script, 30 pills of Vicodine has to last me several months. So, I hoard them---not taking one until I absolutely CANNOT stand the pain. Not the way pain management works. My GP flipantly told me to take a couple of Tylenol. I might as well smell the bottle cap for all the good THAT would do me.
What you are seeing is FRUSTRATION, ANGER AND HURT because I can't seem to find a doctor who will really help me. Oh, I may temporarily think a doctor is really listening to me. But, they are ultimately giving me lip service and nothing more.
Periphernal neuropathy can be caused by several things: Diabetes (which I don't have), a vitamin B-12 deficiency (which I don't have), chemotherapy (which I haven't had to be on), long term use of certain medications (Mirapex is one listed), and exposure to a toxic substance, like Agent Orange (many Gulf War veterans have some form of neuropathy) or lead poisoning (which is a real possibility for me).
For the past year and a half, I have--in the process of doing folk art--worked on old window frames, often sanding them to get old paint off of them. And, I have to confess, I don't wear a mask. Stupid, I know, but I didn't think about anything happening. Well, turns out that if you breathe in dust and/or small particles of lead, it can build up in your body and you have lead poisoning. My husband has been wanting me to get tested for at least 6 months because he thought there may be a link to that and what I've been going through--joint pain, the pain of neuropathy, etc.
On October 17, I had a doctor's apointment with my GP--a follow up to my rheumotologist appointment. My husband went with me and told her our theory. She said it was very interesting, certainly plausible and she would get right back with me on when I would be tested. Well, Monday will be three weeks since that visit and I have not heard a word from her. I called her office Friday, explained to her office girl what she was suposed to do and how long it has been--also told them I would need a copy of my sleep study (which I've never been shown) and that I wanted to pick it up Friday. I called when the office opened. She was supposed to get back with me. It's Saturday night and I haven't heard a word. NOT A WORD.
So, I'm at my wit's end. My neurologist doesn't believe the rheumotologist about the neuropathy. My rheumotologist doesn't "believe in" fibro, although my former neurologist dxed me with that and is well known to my rheumotologist, and my GP listens but doesn't follow through. And, none of them will let me see my medical records. Wonder what's written in t hem?
The obvious answer is go to another doctor. I'm 58, tired, sick, and very frustrated and I don't want to start over. I wish, just one night, one of them would know how I suffer. SUFFER. I know I don't have to convince any of you. I'm just putting this down because tonight I have to. The words are pouring out and I can't stop typing.
In three days, I'll be at the RLS national meeting and I look at that as the knot on the end of my rope. I'm sick and tired of being sick and tired, but I don't--I WON'T--let it keep me from living. So, I shower every day, put on make up, get dressed (I no longer work out of my home) and most days, smile my way through the day. No one cares how I feel anyway. I'm not trying to be a martyr, here. It's just that this has been going on for so long, I've seen too many "looks", been ignored and, even, deliberately evaded because no one believes me. I've been humilitated, told to "take an Excedrin PM" and that "everyone gets this way when they grow older."
So, when I go to that meeting, I'm going as a desparate woman seeking answers or even help. But, what I've written could have been written by so many of you. Not the nitty gritty details, but the overall feelings I've expressed. I'm not alone here-I know that.
Thanks for listening to me.
Jan
IS ANYONE LISTENING?
IS ANYONE LISTENING?
No one is alone who had friends.
-
mafusula
IS ANYONE LISTENING?
Hi Jan, I know where you are coming from. My Drs woudn't listen to me until I did some research and took printouts of medications to my Rheumy, Neuro and GP. I found my GP to be the best to listen to me.
My Neuro gave me Cabaser for my RLS, I take 1mg in the morning and fingers crossed it has been working fantastic.
I took a print out to my GP on a new drug that helps FM pain. It's called Lyrica and it's not cheap but I think it's worth every penny. I have been on it for nearly 2 weeks and I have no pain, sleep wonderfully and have so much energy I cut my lawns the other day.....no pain.
I think it's worthwhile doing some research, taking the printouts to your Dr
and telling him/her that you want to trial these drugs. From my experience, you have to be assertive with these medicos.
Good luck and take care
Gayl
My Neuro gave me Cabaser for my RLS, I take 1mg in the morning and fingers crossed it has been working fantastic.
I took a print out to my GP on a new drug that helps FM pain. It's called Lyrica and it's not cheap but I think it's worth every penny. I have been on it for nearly 2 weeks and I have no pain, sleep wonderfully and have so much energy I cut my lawns the other day.....no pain.
I think it's worthwhile doing some research, taking the printouts to your Dr
and telling him/her that you want to trial these drugs. From my experience, you have to be assertive with these medicos.
Good luck and take care
Gayl
(((((((Jan))))))))
((((((((JAN))))))
Hugs first and real ones in 4 days.
It seems to me that your GP is the one that is going to be of most help. You'll told me before that you like her, just have to stay on her.
I'd make an appt., set up your test for lead posioning through the receptionist, and then plan on a good heart to heart with her.
1. I have too many cooks in the kitchen. No one is listening to each other and it's costing me plenty. I've taken all the test, I've seen all the other docs. and I trust you more than the others .....I NEED YOUR HELP.
THIS IS WHAT I NEED TO TRY FOR MY OWN SANITY. Or I NEED A BREAK FROM MY SYMPTOMS. I need sleep and pain control. Are you willing to help me with this? Please do the lead test and please help with manage my pain for now. I'm not begging and I'm not whining. She knows you can go to a pain clinic, but why put you through a drive that long when your not sure you feel comfortable to drive.
All you asking is for some help, not a miracle, just help. Since you've seen her for so long, I'd explain once more that she could easily look over your records and see that you've been consistant (sp?) in your complaints and it's begining to cause aniexty that without any real answers added to, constant chronic pain and sleep deprivation, it's getting bigger than it needs to be.
Jan you are no less worthy of real help and a good Quality of Life. You are no less making this worse than the rest of us, as in your making it happen on purpose. I won't tell you to forget those ignorant stares or unknowing looks....but I will tell you that the least of your worries right now. Yes, Gladly, I tell you "I don't care what many think about this or that!" And I'm giving you a huge handful of "I don't care." People will always think something about you that isn't so. you can't hardly ever change that unless they are interested in listening. So stand on those RLS legs and get your GP to Listen. Just you and her, no other docs. no others issues, just what needs to be done now. Get that lead test, use hot pokers if you must. This is your life and it is the only one your going to be able to change.
You better believe that being in a room filled with RLSers can change your outlook. Your normal there baby! WE are all normal there. It's a blessing not to have something much worse and deadly, but RLS takes it slowly and under the radar. Stop traffic Jan, your so worth what is so simple to do. Pain is worthless when it's not telling you that something is broke. RLS/Fibro can cause pain that doesn't send your brain the real truth. You know the truth and I swear your strong enough to get a treatment.
I will see you and hug you tons on Wed....
snorts til then hugs and the moon.
Hugs first and real ones in 4 days.
It seems to me that your GP is the one that is going to be of most help. You'll told me before that you like her, just have to stay on her.
I'd make an appt., set up your test for lead posioning through the receptionist, and then plan on a good heart to heart with her.
1. I have too many cooks in the kitchen. No one is listening to each other and it's costing me plenty. I've taken all the test, I've seen all the other docs. and I trust you more than the others .....I NEED YOUR HELP.
THIS IS WHAT I NEED TO TRY FOR MY OWN SANITY. Or I NEED A BREAK FROM MY SYMPTOMS. I need sleep and pain control. Are you willing to help me with this? Please do the lead test and please help with manage my pain for now. I'm not begging and I'm not whining. She knows you can go to a pain clinic, but why put you through a drive that long when your not sure you feel comfortable to drive.
All you asking is for some help, not a miracle, just help. Since you've seen her for so long, I'd explain once more that she could easily look over your records and see that you've been consistant (sp?) in your complaints and it's begining to cause aniexty that without any real answers added to, constant chronic pain and sleep deprivation, it's getting bigger than it needs to be.
Jan you are no less worthy of real help and a good Quality of Life. You are no less making this worse than the rest of us, as in your making it happen on purpose. I won't tell you to forget those ignorant stares or unknowing looks....but I will tell you that the least of your worries right now. Yes, Gladly, I tell you "I don't care what many think about this or that!" And I'm giving you a huge handful of "I don't care." People will always think something about you that isn't so. you can't hardly ever change that unless they are interested in listening. So stand on those RLS legs and get your GP to Listen. Just you and her, no other docs. no others issues, just what needs to be done now. Get that lead test, use hot pokers if you must. This is your life and it is the only one your going to be able to change.
You better believe that being in a room filled with RLSers can change your outlook. Your normal there baby! WE are all normal there. It's a blessing not to have something much worse and deadly, but RLS takes it slowly and under the radar. Stop traffic Jan, your so worth what is so simple to do. Pain is worthless when it's not telling you that something is broke. RLS/Fibro can cause pain that doesn't send your brain the real truth. You know the truth and I swear your strong enough to get a treatment.
I will see you and hug you tons on Wed....
snorts til then hugs and the moon.
-
Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Jan,
Since my appointment last week with the Rhuemy, I truly believe what Sheryl has been telling me about the fact that he doesn't know his a** from his elbow.
All the research that I've done CLEARLY points to Fibro as well. But, I just let him tell me I don't have it. And now my GP will believe that I don't have it.
Anyhoo, that doesn't help you one bit now does it.
I guess the only good thing is that my docs seem to LOVE to hand out medications. If that's a good thing.
I took my first demerol last night and it's now 11:43 a.m. and I just woke up. Went to sleep at 2 a.m. tho....KATHLEEN'S BAND PLACED FIRST!!!!!
I love you Jannie I care so much for you and everyone here and I wish I could be like Glenda the Good Witch and wave my wand....poof.
I want to give you part of my moon take it with you to FL and meet the part I gave to Becat and keep me close I want to take all your pain away....
Love
Penguin
Since my appointment last week with the Rhuemy, I truly believe what Sheryl has been telling me about the fact that he doesn't know his a** from his elbow.
All the research that I've done CLEARLY points to Fibro as well. But, I just let him tell me I don't have it. And now my GP will believe that I don't have it.
Anyhoo, that doesn't help you one bit now does it.
I guess the only good thing is that my docs seem to LOVE to hand out medications. If that's a good thing.
I took my first demerol last night and it's now 11:43 a.m. and I just woke up. Went to sleep at 2 a.m. tho....KATHLEEN'S BAND PLACED FIRST!!!!!
I love you Jannie I care so much for you and everyone here and I wish I could be like Glenda the Good Witch and wave my wand....poof.
I want to give you part of my moon take it with you to FL and meet the part I gave to Becat and keep me close I want to take all your pain away....
Love
Penguin
Beware the Penguin
-
lyndarae guest
Dear Jan, Hey girlfriend.......................I'M LISTENING and I tell you what I'm angry as h***. I know what you have been through with all the tests doc,blood work ect..............................................ect.......................ect............... I got up this morning and ready your post and it makes me Scream, the crap they have put you through this last year and a half is just plain torture.Who do they think they are not giving you your records!!! They are YOUR records and I tell you what I would make it loud and clear you want your records and you want them now!!!!!!!!!!!!! I have even taken mine out of the door while I have been sitting there waiting the doc comes in and finds me reading my records, they usually look at me like I have broken a law or something but oh well, thats their problem. I do agree with becat too many cooks (I call them something else) into your bussiness. I could here the hopelessness in your post Jan and it hurts my heart. You dont deserve to be treated that way none of us do. So much of your post reminded me of my alcoholism, the sick of being sick and tired the fear, the cronic pain,the shame of being sick. We have a disease and all we what is a little peace from it. One thing I want you to remember is right now I know the anxiety you are feeling about going to orlando and it is not helping with the rls. I found that out loud and clear with my tests at college. Take that into consideration, I know it is way more than that I am just saying it is not helping matters. I cant count the times I have found a doc and they seem to know what they are doing and hear me and work with me and it only of a matter of months I become just another number. And one that they see comming and think oh hell she is back. Something good is going to happen for you this weekend hon I just feel it. I have been reading other posts and all this new meds comming out sound so good but the thought of trial after trial makes me just want to crawl into a hole and die............... If I wasnt sober now I probably would have done that by now. I was running errands with my girlfriend the other day and I got a cramp in my foot so bad I had to take my sock and shoes off my toes were so spread apart they looked deformed,she laughed!!!!!!!!!!!!! I was close to tears in pain and she laughed.................because she doesnt get it. She doesnt have it....................she might as well be one of those docs we see they dont have it and they dont get it and the dont rightly give a ****.ANGRY thats what it makes me!!!!!!!!!!! I wish I had some good advise to offer you Jan but I dont,other than getting the lead poision test done...............and after that then what you either have it or not and if you do then what??????? That on top of everything else is overwhelming to me and I am not in your shoes. But I have walked a mile with you and I understand. I dont mean to sound negative about any of it but it sure doesnt make me positive either..................so I am just speaking from the heart when I tell you I love you Jan you saved my butt that day so long ago and made a huge differince in my life I will always be grateful to you for that you cared about me,and I care about you,if I could change any of it for you I would in a heartbeat. You are in my prayers every day and I know GOD doesnt give us more than we can handle. I love ya girlfriend~~~~~~~~~~~~~~~~~~~~~~Lyndarae
-
ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I don't think there is anything I can add after all the eloquent replies. I do hope it gets better. I hate to open up these posts and see people in this place. You've been here so often, Jannie, you deserve some time free from this, truly you do.
I work with lead everyday, too. But I work with a different kind - mine is solid. I do know that the dust is about the worst, however. I can be exposed by restoring old glass - you often have to cut the came and then you breathe the dust. WEAR A MASK. I hate it, but I wear one when I solder (flux fumes), when I cut came (lead dust), when I use whiting, and when I clean my studio, including vacuuming.
One other tactic to try is to Assume things. Sales people call is the assumptive close. Call your nurse and say, "I'm calling to schedule the lead test. When should I come in?" Instead of asking for anything, you start from the position that they WILL do it. Same with your sleep study,
"I will be coming in for my lead test. Please have a copy of my sleep study ready as I will pick it up at that time."
Looking forward to seeing you soon. Hey, I just had an idea. You know how we all get meds that we can't use? Maybe we should bring them to Orlando with us. We could see if there are any places to 'donate' them, if you get my drift. For example, I vomit when I take one of the pain relievers I have been given. I'm sure there is a place to donate those when I get there.
Ann
I work with lead everyday, too. But I work with a different kind - mine is solid. I do know that the dust is about the worst, however. I can be exposed by restoring old glass - you often have to cut the came and then you breathe the dust. WEAR A MASK. I hate it, but I wear one when I solder (flux fumes), when I cut came (lead dust), when I use whiting, and when I clean my studio, including vacuuming.
One other tactic to try is to Assume things. Sales people call is the assumptive close. Call your nurse and say, "I'm calling to schedule the lead test. When should I come in?" Instead of asking for anything, you start from the position that they WILL do it. Same with your sleep study,
"I will be coming in for my lead test. Please have a copy of my sleep study ready as I will pick it up at that time."
Looking forward to seeing you soon. Hey, I just had an idea. You know how we all get meds that we can't use? Maybe we should bring them to Orlando with us. We could see if there are any places to 'donate' them, if you get my drift. For example, I vomit when I take one of the pain relievers I have been given. I'm sure there is a place to donate those when I get there.
Ann
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.
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.
I just got home, opened my email and saw all of these wonderful responses. This is HOME! It always has been. When I titled my thread, I didn't mean that no one here was listening, I meant my doctors. I want you all to know that.
What can I say but THANK YOU! I'm copying and pasting all of your responses because I want to save them for my next doctor's apointment. I think I get so frustrated, I can't see the forrest for the trees!
Gayle, thank you for your suggestions. Penguin, I love you, too and we're here for each other! I'll take a piece of the moon, you bet! Ann, I PROMISE--I WILL wear a mask! Thank you for your good thoughts and suggestions! I'll see you soon. Becat and Lyn---we've been through a lot together (all of us have) and you two know me so well. I needed that pep talk, Becat. You KNOW how much! Lyn, you, too!
Lyn, I wish you and Penguin could come, too, but I'm glad you're going to get to see your girls, Lyn. I know how much that means to you! Becat, just four days! Three if you don't count today. I feel like I'm going to be in a healing place next week. Ann, Ruby, and you, Becat. Healing, relaxing, LEARNING, and with friends who CARE.
Thank you! What's that saying? "It's always darkest before the dawn." My "dawn" is certainly brighter because of friends like you. And, you're right, Lyn. God doesn't give us more than we can handle. Sometimes, we just don't realize how MUCH we can handle.
Much love to all of you
Jannie
What can I say but THANK YOU! I'm copying and pasting all of your responses because I want to save them for my next doctor's apointment. I think I get so frustrated, I can't see the forrest for the trees!
Gayle, thank you for your suggestions. Penguin, I love you, too and we're here for each other! I'll take a piece of the moon, you bet! Ann, I PROMISE--I WILL wear a mask! Thank you for your good thoughts and suggestions! I'll see you soon. Becat and Lyn---we've been through a lot together (all of us have) and you two know me so well. I needed that pep talk, Becat. You KNOW how much! Lyn, you, too!
Lyn, I wish you and Penguin could come, too, but I'm glad you're going to get to see your girls, Lyn. I know how much that means to you! Becat, just four days! Three if you don't count today. I feel like I'm going to be in a healing place next week. Ann, Ruby, and you, Becat. Healing, relaxing, LEARNING, and with friends who CARE.
Thank you! What's that saying? "It's always darkest before the dawn." My "dawn" is certainly brighter because of friends like you. And, you're right, Lyn. God doesn't give us more than we can handle. Sometimes, we just don't realize how MUCH we can handle.
Much love to all of you
Jannie
No one is alone who had friends.
-
cornelia
Hi Jan,
I just read your post. There is not much room for me to say something, as your dear friends have already said some very nice and warm things to you.
Your story is horrible. I mean, what has a person to do to get the right treatment? I am not familiar with the system in your country, but there MUST be a dr. in the whole of the United States that will be able to help and respect you and make your pain bearable? You are not even asking for taking it away, only make it bearable!
Still, I think I have said it before: your dose of Mirapex is high. You know my neuro always says: more is not necessarily better (I know you have been on an even higher dose).
If you have 24/7 RLS it is much better to try Dostinex. Can you get your neuro to prescribe it to give it a try?
I think that by now it is rather vital for you to see your file. You are entitled to see it (I mean, it's all about you, isn't it, you are not asking to see your neighbour's file out of sheer curiosity). If you have seen it you can act accordingly.
This weekend you will be seeing a lot of docters during the meeting. Take advantage of it and try to get some good advice from them.
In the meantime, take care and if possible: enjoy the meeting tremendously!
Corrie
I just read your post. There is not much room for me to say something, as your dear friends have already said some very nice and warm things to you.
Your story is horrible. I mean, what has a person to do to get the right treatment? I am not familiar with the system in your country, but there MUST be a dr. in the whole of the United States that will be able to help and respect you and make your pain bearable? You are not even asking for taking it away, only make it bearable!
Still, I think I have said it before: your dose of Mirapex is high. You know my neuro always says: more is not necessarily better (I know you have been on an even higher dose).
If you have 24/7 RLS it is much better to try Dostinex. Can you get your neuro to prescribe it to give it a try?
I think that by now it is rather vital for you to see your file. You are entitled to see it (I mean, it's all about you, isn't it, you are not asking to see your neighbour's file out of sheer curiosity). If you have seen it you can act accordingly.
This weekend you will be seeing a lot of docters during the meeting. Take advantage of it and try to get some good advice from them.
In the meantime, take care and if possible: enjoy the meeting tremendously!
Corrie
Your post brought tears to my heart...Thanks for the good cleansing crying session! I really mean that! The frustration level can be overwhelming, especially for those of us with chronic pain, fatigue etc dealing with so many obligations and demands, family, career, doctors who may be well meaning yet we are just a tiny portion of their care giving say one thing and do another.
There was a time I thought I had extrodinary staminia, a high tolerance to pain. This disease has a way of destorting our sense of self. Finding rls org has helped me to realize that we do have a high tolerance and stamina as we are forced to walk blindly in a world which seems incapable of understanding our situation.
Even though I have only known you such a brief time, we have never met, each of you have become a very important part of my life, I love you all so very much! The support and frustration that is shared sustains me. I am truly thankful.
As I write this I know that many of you are together at the RLS convention, sharing, caring, learning, voicing our collective concerns and needs. The last couple of nights, as I look at Venus and the crescent moon, I believe and have faith in the healing power of the love and compassion expressed here and know that the wisdom and determination of these individuals will bring measureable changes to how RLS is viewed.
*********Positive Thoughts**************
**********Healing Energy***************
*#$%@Howling at the Moon(*$^#@
Love Hazel
There was a time I thought I had extrodinary staminia, a high tolerance to pain. This disease has a way of destorting our sense of self. Finding rls org has helped me to realize that we do have a high tolerance and stamina as we are forced to walk blindly in a world which seems incapable of understanding our situation.
Even though I have only known you such a brief time, we have never met, each of you have become a very important part of my life, I love you all so very much! The support and frustration that is shared sustains me. I am truly thankful.
As I write this I know that many of you are together at the RLS convention, sharing, caring, learning, voicing our collective concerns and needs. The last couple of nights, as I look at Venus and the crescent moon, I believe and have faith in the healing power of the love and compassion expressed here and know that the wisdom and determination of these individuals will bring measureable changes to how RLS is viewed.
*********Positive Thoughts**************
**********Healing Energy***************
*#$%@Howling at the Moon(*$^#@
Love Hazel
-
IanFraughton
- Posts: 65
- Joined: Thu Feb 17, 2005 7:11 pm
- Location: Vernon, BC
- Contact:
(((Ann)))
I'm making you my new hero. To me all the heros before pale in comparison to the strength, courage and conviction you have in you. And don't say you don't have any of these things because you do, I know it seems hopeless sometimes but you have to hang in there. I like my doctor too but I was ready to fire his **** if he didn't start treating me better but now realize he needed my sleep study(which said I had mild to moderate PLMs
) in order to get a better idea as to what was going wrong. It's sad that you've gotten yours and now seem to be caught in a battle of smarts between 3 docs. My GP hasn't even suggested a Neuro and I'm starting to be thankfull that he didn't and that he seems to be knowledgable enough about RLS to have been able to help to some degree. Perhaps you could go and talk to some other doctors(an interview) to see if you could find one who knows about RLS and is willing to fight it to the best of their ability. I know it's a lot more running around but I'm sure if you had a doc who not only believed you but could help you too I bet your quality of life would improve, I know mine did.
Hope things start getting better for you soon love.
Peace
Ian
I'm making you my new hero. To me all the heros before pale in comparison to the strength, courage and conviction you have in you. And don't say you don't have any of these things because you do, I know it seems hopeless sometimes but you have to hang in there. I like my doctor too but I was ready to fire his **** if he didn't start treating me better but now realize he needed my sleep study(which said I had mild to moderate PLMs
) in order to get a better idea as to what was going wrong. It's sad that you've gotten yours and now seem to be caught in a battle of smarts between 3 docs. My GP hasn't even suggested a Neuro and I'm starting to be thankfull that he didn't and that he seems to be knowledgable enough about RLS to have been able to help to some degree. Perhaps you could go and talk to some other doctors(an interview) to see if you could find one who knows about RLS and is willing to fight it to the best of their ability. I know it's a lot more running around but I'm sure if you had a doc who not only believed you but could help you too I bet your quality of life would improve, I know mine did.
Hope things start getting better for you soon love.
Peace
Ian
I call my pacing the "Waltz of the Damned". Anyone care to dance...?
-
Lovechild
Hi my name is Jamie aka Lovechild and I just read your post. I feel so much sadness, anger, and like giving up because everything that you said was so true. It is like we are fighting a never ending battle that we will never win. How much more can we take? And these doctors just do not understand or seem to care at all. I wish that we could all be doctors to help thoses with rls. They think oh rls, just minor symptoms of your legs moving or whatever they are thinking, but they are all thinking WRONG. I know that I can't go on much longer like this. I really have thought of suicide because of everything we all have mentioned. This is just so unfair. I also wish that if I had to get a disease, rls, it would be something the doctors could see and know something about. Then I would get help. Oh how are we all going to make this right with all these doctors. We are all so alone and that is just not right!!!!!!!!!!!!!!!!!
Jamie
Jamie
-
Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Jamie, you said it yourself....WE are so alone.
But Jamie, WE have WE! You know what I mean? Not one single one of us on this site is really alone. there is the WE.
Neurontin seems to be helping me but I may need to go up to the 900 mgs as I am in flare up again.
I know a lot of docs need to get their butts in gear and realize the truth. The only hope we have is that these docs will
Love
Penguin
But Jamie, WE have WE! You know what I mean? Not one single one of us on this site is really alone. there is the WE.
Neurontin seems to be helping me but I may need to go up to the 900 mgs as I am in flare up again.
I know a lot of docs need to get their butts in gear and realize the truth. The only hope we have is that these docs will
Love
Penguin
Beware the Penguin
Jamie
You are going through such a bad, bad time. I've been reading your posts on your pregnancy and all of the agony you are experiencing.
But, honey, we AREN'T alone. Not really! I know my post was full of despair and frustration. And, those are feelings I will have now and again. They are legitimate--there's no doubt. Just as your feeling are--legitimate and REAL.
I'm not going to promise anyone that I won't write a post like that again. Who knows how bad a night may get for me---how frustrated I will get (I still am), and how much pain I'll have. But, honey, I KNOW there's a brighter tomorrow for you, for all of us! As Penguin said, WE ARE NOT ALONE! There IS the WE!
I came back from the conference tired, overwhelmed and in pain. But, you know what else I came home with? HOPE! Honest to goodness HOPE! I spent time with some very dear friends, met some new friends and I know I'm not alone--besides the friends here on this board. YOU JAMIE ARE MY FRIEND! But, I also spent time listening---LISTENING to doctors and scientists talking about research done, research planned and HOPE! Even though our own doctors may seem like they don't care--may seem overwhelmed and not willing to listen--there are many, many doctors who DO CARE! Who DO LISTEN! I also came home armed with information, which I will discuss with my doctor (in a very dipolomatic and careful way, of course).
Jamie, I am praying for you and your baby. Just hold on, honey. HOLD ON! Please feel free to PM me any time you want to talk. I understand! WE ALL UNDERSTAND! This place is HOME for all of us and we are your FAMILY, Jamie.
Much love,
Jan
You are going through such a bad, bad time. I've been reading your posts on your pregnancy and all of the agony you are experiencing.
But, honey, we AREN'T alone. Not really! I know my post was full of despair and frustration. And, those are feelings I will have now and again. They are legitimate--there's no doubt. Just as your feeling are--legitimate and REAL.
I'm not going to promise anyone that I won't write a post like that again. Who knows how bad a night may get for me---how frustrated I will get (I still am), and how much pain I'll have. But, honey, I KNOW there's a brighter tomorrow for you, for all of us! As Penguin said, WE ARE NOT ALONE! There IS the WE!
I came back from the conference tired, overwhelmed and in pain. But, you know what else I came home with? HOPE! Honest to goodness HOPE! I spent time with some very dear friends, met some new friends and I know I'm not alone--besides the friends here on this board. YOU JAMIE ARE MY FRIEND! But, I also spent time listening---LISTENING to doctors and scientists talking about research done, research planned and HOPE! Even though our own doctors may seem like they don't care--may seem overwhelmed and not willing to listen--there are many, many doctors who DO CARE! Who DO LISTEN! I also came home armed with information, which I will discuss with my doctor (in a very dipolomatic and careful way, of course).
Jamie, I am praying for you and your baby. Just hold on, honey. HOLD ON! Please feel free to PM me any time you want to talk. I understand! WE ALL UNDERSTAND! This place is HOME for all of us and we are your FAMILY, Jamie.
Much love,
Jan
No one is alone who had friends.
-
Lovechild
I don't mean to affend anyone by saying that we are alone. It has been a really bad time for me as you know, but me personally I do feel alone, not by you guys, but the darn doctors and my family, even though God bless them they are trying to help and be supportive, but unfortunately they don't understand and I just feel so lost. HAVING RLS CAN REALLY DEPRESS YOU. I know it is me. A lot of times when I write I am only venting to get it out just like you do. It just feels like I am only 23 and this makes me feel 80. It just doesn't seem fair. I am glad that a lot of you got to go to that meeting. I wish I could have gone. I know that it would have made me feel better too. Right now there just doesn't seem to be any hope in me and please forgive me if I bring anyone else down. I do not mean to.
Jamie
Jamie
Oh, honey
You didn't offned me or anyone else on here! We were just trying to let you know (and looks like you already do) that we're here for you, anytime! Don't worry about offending us! You won't! You HAVE to vent, let it out. It's unhealthy to keep all of that bottled up inside.
I'm sorry if I said anything to you that made you feel that way. It's hard to find words to comfort someone in your situation. Let's face it, kiddo. Pregnancy isn't always the best time of your life, anyway. You want the baby, of course, but you can be miserable. AND, you've for RLS on top of it.
So, absolutely no offense taken. And, please, write how you FEEL. That's the purpose of this support board--SUPPORT. You didn't bring anyone down, honey. Sometimes, we are lifted UP when we help others.
Try to get some rest and, PLEASE, come on here anytime, and the invitation to PM is is always open. I've been pregnant with twins--didn't have RLS--but know how miserable you can be. You are in a very tough situation, honey. And, we're all here for you.
Hugs
Jan
You didn't offned me or anyone else on here! We were just trying to let you know (and looks like you already do) that we're here for you, anytime! Don't worry about offending us! You won't! You HAVE to vent, let it out. It's unhealthy to keep all of that bottled up inside.
I'm sorry if I said anything to you that made you feel that way. It's hard to find words to comfort someone in your situation. Let's face it, kiddo. Pregnancy isn't always the best time of your life, anyway. You want the baby, of course, but you can be miserable. AND, you've for RLS on top of it.
So, absolutely no offense taken. And, please, write how you FEEL. That's the purpose of this support board--SUPPORT. You didn't bring anyone down, honey. Sometimes, we are lifted UP when we help others.
Try to get some rest and, PLEASE, come on here anytime, and the invitation to PM is is always open. I've been pregnant with twins--didn't have RLS--but know how miserable you can be. You are in a very tough situation, honey. And, we're all here for you.
Hugs
Jan
No one is alone who had friends.