- Joined
- Jun 19, 2020
- Messages
- 29
- Reason
- PALS
- Diagnosis
- 06/2020
- Country
- CH
- State
- VD
- City
- Lausanne
Hi everbody,
I m newly diagnose in june 2020. I hesitate a long time to post here because it s seem it's a step in the reality of the dicease (psychologicaly I cant pronoce the name for me now, I just can say the dicease). I m still waiting a second opinion in 2 month...
First I want to say excuse my english because I from Switzerland and my first language is french.
Second but most important I want to say thank you to the people on the forum, you look so helpfull and such a good ressource. One of my goal in the futur is also to help people here on the forum or in my country, I need to feel usefull.
I m 26yo soon 27., I m a nurse (don t work anymore, because it s to hard physicaly), I was a boxer and really activ girl. Really curious about life, interessted about everything, love travelling,...
For now I can do prettymuch everything if I haven't this f****g pain, that make me crazy and sleepless.
Again sorry for the long post but I m gonna make a head to toe (a nurse always be a nurse doesnt matter what lol)
Head: headach, I think because of the tension/stifness in my neck and my jaws.
Mind: I have PBA I cry really easly (I thing it s because I m depressed and anxious) but the more wierd is laugh for nothing, I feel bad but I laugh...
Sometime I feel very anxious and depressed (take lorazepam. Help a little) I have a lot of questions in my head. I m afraid to become dependant, I m affraid to go in a nursing home, I m affraid to be in jail in my own body. I m affraid to die. But for now whats is the moste awfull for me is the pain. I think a can manage a lot of things but be in pain is juste the worse for my. It's like the last time of my "normal" life are stollen.
Mouth: tension/stifness/ cramps in my jaws and my tongue. I can mouve my jaws and my tongue but doesnt matter what I do it's painfull, I also have kind of cramps in my lips and my chin. Sometimes my tongue has fasciculations. When I eat it s difficult for my tongue to go everywhere in my mouth. I can speake pretty good but I have trouble pronouce certain words.
Throat: I have troubles swalloing. Sometimes it s go in the wrong way. I also experienced laryngospasm wich is awfull and make me feel super anxious.
I also have cramps and muscle burning feeling.
Neck: lost of strength, cant hold my head straigt. It's really painfull. Feel like muscle burn and cramps. I try to stretch, put a pillow, massage,.. nothing seems to work.
Shoulders: same as the neck
Arms: cramps in biceps forarms and finger, stifness in fingers. Weakness in left hand but notpainfull. Shakiness in both arms when I make an effort.
Respiration: the pneumofonction was normal. I have shortness of breath when I make a effort (like climb the stairs). When I have cramps/contractions/stifness In my abs/diaphragm area it make me feel I have trouble breathing. Also I think sometime I have anxiety and it doesnt help.
Belly : abs cramps and thigndness. Constipation( well manage with movicol and probiotic) Delayed gastric emptying make me feel inconfortable and too full really fast when I eat. I lost 6lbs in 3 month.
Back: pain, thigness, stifness, weakness (cant stay straight when sitting or when I m standing up) I try to strech, massage, heat blancket but nothing seems to help for more then 10min and the pain comeback.
Legs: pain, thigness, stifness, weakness (specialy the left but both become like noodle when I walk to much or be on my legs for a too long time (whe I m trying to cook or wait in a queue for exemple). For now the pain in my legs is the most awfull and also hard to explain, it spend most of the last week in bed because I have to much pain but doesnt help.
I feel my legs are so thight, it s like I have permanent cramps in it. (Specially the calf,hammstrings and butt) I try to stretch, heat blancket, massage, tramadol, paracetamol, ibuprofen, take magnesium nothing seems to help. They make me sleepless. PC dont know what to do with me and neuro appointment is in a long time. I feel so depressed with this pain and make me so affraid of the futur.
Mindset: I want to be confortable, I refuse to take Riluzole, I think I don't want a feeding tube, I want a NIV (CPAP) but no trach juste for my comfort.
Once again sorry for this long message, but I feel so helpless, maybe you have some advice because I feel the medical wold is super slow and unconcern about me.
Thank you so much for you re reply and you're support.
Best regards
Camille
I m newly diagnose in june 2020. I hesitate a long time to post here because it s seem it's a step in the reality of the dicease (psychologicaly I cant pronoce the name for me now, I just can say the dicease). I m still waiting a second opinion in 2 month...
First I want to say excuse my english because I from Switzerland and my first language is french.
Second but most important I want to say thank you to the people on the forum, you look so helpfull and such a good ressource. One of my goal in the futur is also to help people here on the forum or in my country, I need to feel usefull.
I m 26yo soon 27., I m a nurse (don t work anymore, because it s to hard physicaly), I was a boxer and really activ girl. Really curious about life, interessted about everything, love travelling,...
For now I can do prettymuch everything if I haven't this f****g pain, that make me crazy and sleepless.
Again sorry for the long post but I m gonna make a head to toe (a nurse always be a nurse doesnt matter what lol)
Head: headach, I think because of the tension/stifness in my neck and my jaws.
Mind: I have PBA I cry really easly (I thing it s because I m depressed and anxious) but the more wierd is laugh for nothing, I feel bad but I laugh...
Sometime I feel very anxious and depressed (take lorazepam. Help a little) I have a lot of questions in my head. I m afraid to become dependant, I m affraid to go in a nursing home, I m affraid to be in jail in my own body. I m affraid to die. But for now whats is the moste awfull for me is the pain. I think a can manage a lot of things but be in pain is juste the worse for my. It's like the last time of my "normal" life are stollen.
Mouth: tension/stifness/ cramps in my jaws and my tongue. I can mouve my jaws and my tongue but doesnt matter what I do it's painfull, I also have kind of cramps in my lips and my chin. Sometimes my tongue has fasciculations. When I eat it s difficult for my tongue to go everywhere in my mouth. I can speake pretty good but I have trouble pronouce certain words.
Throat: I have troubles swalloing. Sometimes it s go in the wrong way. I also experienced laryngospasm wich is awfull and make me feel super anxious.
I also have cramps and muscle burning feeling.
Neck: lost of strength, cant hold my head straigt. It's really painfull. Feel like muscle burn and cramps. I try to stretch, put a pillow, massage,.. nothing seems to work.
Shoulders: same as the neck
Arms: cramps in biceps forarms and finger, stifness in fingers. Weakness in left hand but notpainfull. Shakiness in both arms when I make an effort.
Respiration: the pneumofonction was normal. I have shortness of breath when I make a effort (like climb the stairs). When I have cramps/contractions/stifness In my abs/diaphragm area it make me feel I have trouble breathing. Also I think sometime I have anxiety and it doesnt help.
Belly : abs cramps and thigndness. Constipation( well manage with movicol and probiotic) Delayed gastric emptying make me feel inconfortable and too full really fast when I eat. I lost 6lbs in 3 month.
Back: pain, thigness, stifness, weakness (cant stay straight when sitting or when I m standing up) I try to strech, massage, heat blancket but nothing seems to help for more then 10min and the pain comeback.
Legs: pain, thigness, stifness, weakness (specialy the left but both become like noodle when I walk to much or be on my legs for a too long time (whe I m trying to cook or wait in a queue for exemple). For now the pain in my legs is the most awfull and also hard to explain, it spend most of the last week in bed because I have to much pain but doesnt help.
I feel my legs are so thight, it s like I have permanent cramps in it. (Specially the calf,hammstrings and butt) I try to stretch, heat blancket, massage, tramadol, paracetamol, ibuprofen, take magnesium nothing seems to help. They make me sleepless. PC dont know what to do with me and neuro appointment is in a long time. I feel so depressed with this pain and make me so affraid of the futur.
Mindset: I want to be confortable, I refuse to take Riluzole, I think I don't want a feeding tube, I want a NIV (CPAP) but no trach juste for my comfort.
Once again sorry for this long message, but I feel so helpless, maybe you have some advice because I feel the medical wold is super slow and unconcern about me.
Thank you so much for you re reply and you're support.
Best regards
Camille