New and so much pain. Need help.

CamilleQ

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PALS
Diagnosis
06/2020
Country
CH
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VD
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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
 

Nikki J

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I am sorry for you.
your story sounds very atypical And difficult.

I am confused you say you were diagnosed yet speak of a long wait for neurologist? who diagnosed you? What tests were done? You would have needed a neurologist for a proper diagnosis. Can’t that neurologist help you?
 

CamilleQ

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Messages
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Reason
PALS
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06/2020
Country
CH
State
VD
City
Lausanne
I went to my PC a lot of time, after all he refere me to a private neurologist, he made an EMG/NCS after he take me an appointment in neurmuscular specialist (in a big university hospital) I saw the 11th of july they made an other EMG, I spend a full week in hospital, they made a lot of blood work (they found an activ infection of CMV but it cant explain my symptomes), MRI,... and now I m waiting for a second opinion in 2 month in an other univerity hospital with an other neuromuscular specialist.
They didnt give me much information about pain and what to do, it seems it uncommon to have so much pain, the first neuro tell me ALS is unpainfull...
I come here because I need some support but also because maybe you have some tips and tricks.

They prescrive paracetamol, ibuprofen,tramadol, lorazepam, tradozone and tolperisone.

For now I haven't take the tolperisone because I saw normaly in ALS they give baclofen.
They also prescrive physical therapy.
And I m gonna have an appointment with a respiratory therapist (not sur it's the right word in english) to speak about CPAP, because they tell it s good to begin early to "protect and preserve" the respiratory capacity.

They also suggest maybe an appoinment with palliativ care, but for now I m not capable to make it, pschologicaly it's to hard for me.

Do you think tolperisone can make something? Somebody experienced the same as me or a little bit the same?

I don't know how it's in the US but here in switzerland (wich is a good country with great care) I feel helpless and abandonned. Every things take to much time...
 

Nikki J

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Tolperisone is not available in the US but its mechanism of action looks very appropriate for ALS. In your place I would definitely give it a try.

if your neck is so weak have you tried a collar? Sometimes you have to try more than one before you hit the right one for you

for cramps besides magnesium people have had some effect with quinine, pickle juice or mustard. In the US the cardiac drug mexilitine is sometimes prescribed for severe cramps in ALS

i hope they are considering bipap as continuous pressure is bad for ALS though you said your pfts were normal?

I was sent to palliative care early as my clinic believes it improves quality of life. I encourage you to consider as that specialist may have ideas and resources to help you be more comfortable
 

CamilleQ

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PALS
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06/2020
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Thanks for your advices.

I m gonna try collar, I use now "travel/plane pillow"

Quinine and mexiletine aren't avalaible in Switzerland.
Maybe I can try to drink some Schweps (I think there is quinine in it).

I gonna definitevely ask wich kind of respiratory support is the best in my case, I hope they know what they do...

Maybe I have to consider palliativ care as an option.. it seems so unreal I need all of this stuff...

I also read sometimes PALS have hyper sensitivity and tolerate unwell the pain because the nervous system is damage, is it true?

And (sorry it's stupid questions). But what is pickel juice? And mustard it's normal mustard we can buy in the groccery store?

Maybe I also gonna ask my GP (see him tomorrow) to switch lorazepam for valium. It seems to help with cramps and "thightness" and also for anxiety.
 

Nikki J

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Yes tonic water and bitter lemon both have quinine. We can’t get pills here either

pickle juice is the liquid from a jar of pickles -concombre macéré dans du vinaigre??
 

CamilleQ

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Messages
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PALS
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06/2020
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VD
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Lausanne
Thank you so much for your answer.
I think people here can unterstand how my family and I are so bad.
 

ReginaS

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--
Dear Camille,

So sorry to welcome you here. Sigh. 26 and an ALS diagnosis. The people here are wonderful.

My partner Tom loved drinking pickle juice and eating pickles as long as he could during his ALS time.
Good for you for asking for a 2nd opinion. Will the first neurologist/hospital give you the EMG test results? Did they let you look at them? With the help of some friends, I found a good therapist. Tom ended with his after he could no longer manage the stairs and then his therapist invited himself to the house, as a friend :) - it was quite an experience.

A couple of things come to mind after reading your post. I am only saying this bc of your description about the pain. Thinking of overworked muscles but that might be completely wrong. My partner was very happy once he finally had his electric, reclining wheelchair with headrest. It gave him and his body much more support and his muscles did not have to work so hard any longer. Same with the electric reclining chair that helped him to sit or stand up - he used it as a bed too.

He was never "ready" for theses devices and changes but followed the advice that he got in his clinic... first the AFO and cane, then the walker, then the wheelchair. Each of these devices was really helpful and each time in hindsight he thought they would have been helpful sooner. It took a lot of courage on his part and it was very hard to see that life was changing so much from what we thought it would be like.

Palliative care was good for him as they answered the questions that he had differently than the neurologists and he needed and wanted those answers. Many of these were end of life questions - his questions. At the point when he went there, he was ready for these. -- Also, here in the US the palliative care and hospice physicians (and pain clinics) seem to have different access to pain medications. A different friend of mine with lots of pain and cramps needed that and found it helpful.

Physicians and nutritionists advised him to get a feeding tube but that was not his preference. As his caregiver I supported whatever he wanted. This was his journey. We always hoped that in the end, his breathing would give out. However, his breathing held up better compared to his ability to swallow.

More than anything we had many, many good, rich times during this journey. Both of us learned that it was really OK to be sad, become helpless and be loved and taken care of.

All the best to you!!!
 

CamilleQ

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PALS
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Thank you for you answer, it make my heart warmer. Because now I m in emotionnal rollercoaster...

The first neuro I saw in a private consultation (not in hospital) don't speak about ALS but refer me to a specialist in hospital, my mom came for the consultation (because we tought it's gonna be a bad news and dr also suggest it's a good idea I have somebody with me). After the EMG/consultation they spoke about ALS. But the protocol is to have an other EMG in an other hospital with other neuromuscular specialist 3 month later.

For now I don't have a copy of my EMG and all of my medical stuff, Dr transfer directly to other Dr.

I m also having a psychiatrist (psychotherapist). I know her before and I think it's a great help for me.

I also gonna have contact with home care to adapt my flat (actually it's my mother flat because I move to her, I can't stay alone in mine). And we also gonna speak about material help (bed, walker,....). They also have a social worker to help with all the paper and financial things.

I m gonna try pickel juice- @Nikki J in french we say "cornichons au vinaigre" ;)

I m gonna see my PC tomorrow, he has to take appointment for swallow test. I also gonna ask for appointment with palliativ care/ pain specialist.
 

KimT

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Hi Camille,
Do you have access to CBD oil? It helped me relax, sleep, and with foot cramps.
I'm so sorry you're going through this. We're here for you.
 

CamilleQ

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Hi Kim,

Thanks again for you're answer.

I think about CBD, but it's make me a little bit scary because when I was younger (little thug ;)) I was smoking marijuanna but it had panic attac with it so I never smoke again. I m affraid that CBD with <1% thc gonna make the same issue, I really don't need this issuse now...
What do you think Kim?
 

Dee Dee 0617

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Hello Camille,
I am so sorry you're here, but you are welcome.
CBD oil doesn't have the same affect as smoking a joint. It truly can help with muscle pain, cramping, and anxiety. As it is with most psychedelics the experience feeds off your own state of mind. If you're warm and safe and cozy, kick back with mellow tunes and relax you get some control back.
You get to be whatever you need to be, to get through this. Anger is not a problem, tears no problem, the laughter thing you need to talk with your ALS neurologist.
Fear, there's a problem. Kiddo I don't want you to be afraid of anything. This disease is not easy, but information will keep any fears at bay. Ask anything and everything you need to know about.
You're not alone and you are not going to die today, so what can I help you with today?
 

blitzc

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Messages
352
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PALS
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OH
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Oh, Camille, I'm so glad you found us! We will be here for you. It sounds like you are on your way to getting the support and assistance needed including the best meds.

In my opinion, don't be afraid of Riluzole. Or CBD oil. I'm not a fan of regular Marijuana, medical or not. But from the people here, I have learned of CBD and its benefits for the many issues and plan to use it in the future. Listen to Kim and others...they are very reliable on the issue of CBD usage.

Remain calm and turn to whatever higher power you call on. Acceptance, peace, and humor will return to your life. ❤
 

KimT

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Camille,
I had the same fear. I never drank or smoked week. I don't like to feel dizzy or out of control. I started out with a couple of drops and thought I'd have a panic attack. I've taken up to 100mg of CBD oil with absolutely no feeling other than getting sleepy. I have elderly friends in the building who take it too. One is 96 and recovered from CV! He loves his CBD oil.
I've also taken very small doses of THC for pain. THC can make you high but it works for pain and you can introduce it slowly.
Please don't hesitate to try a good quality CBD oil. It might make life a little better for you. I was able to get off Xanax by taking CBD and I had been taking Xanax for panic attacks since my 30s.
 

lisa g

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FORT PIERCE
If you try CBD make sure it's good quality. Everyone seems to be promoting it these days. I've been using CBD oil since I was diagnosed. I started to use it mainly to help with anxiety since I didn't want to take valium or other sedatives. I now use a ratio of 1 CBS: 9 THC and only use that at bedtime. I find it helps me sleep and helps with not getting leg cramps.

If you only want CBD oil with no THC additives Charlotte's Web is a reputable place to purchase. If you wanted the added THC in it you would need to get a MM card and purchase it through a dispensary.
 
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