Pain relief for CBD Patient

[ARutzen]

Good afternoon everyone,

My mom woke me up this morning with a lot of pain in her mouth and I got her to the dentist a few hours later, but she does have an infected tooth that needs surgery to be removed. They can't get her in for another 2 weeks, but have given her Vicodin for pain and amoxicillin for her infection. She's also been in more pain physically on her bad side (left) and has been more obviously in pain than I've ever seen her before.

I told her we should contact her doctor to ask for pain meds stronger than Aleeve or Tylenol, but she told me they suggested a muscle relaxer first before they try anything else. I thinks she's already tried that and it didn't work, but when I was explaining that no... she needs something stronger... she said they probably won't give her anything to help.

Am I the only one who thinks that is completely unethical and cruel? They know she's been diagnosed by the Mayo Clinic with Corticobasal Degeneration... I don't know why they wouldn't help her in some way with pain... I'm considering looking for another doctor for her. But I guess my main question is - does anyone know what I should ask for? The left side, mainly her shoulder and her hand, are so tight and sore that all I see is her cringing in pain. And I know the muscle relaxers they've tried with her, do not work... that's what they wanted to try again before anything else, but I'm pretty sure it won't have any effect on her.

Also, the infected tooth... Should I be worried about that not getting fully resolved until the 1st or just relax? I hate to be so anxious... but it's my mom.

Any advice/help is greatly appreciated.

-A

[bsilverman]

Have you considered moving her into Paliative Care or Hospice? They are more generous with pain medications. It's not difficult to qualify for either (I'm assuming you are in the US) with these diseases. It might mean she would be denied other treatments but you can always pull her out of these programs and back into general care if you need to.

[ARutzen in reply to bsilverman]

Hi there, no I have not. Not sure if that means I have to put her somewhere else and not have her at home. She knows she may have to go at some point, but we're trying to keep her with family as long as possible.

[Martina_MP in reply to ARutzen]

Hi, In the US (since you mentioned Mayo) Palliative Care is a specialist consult and they specialize in pain and symptom control. Insurance should cover it. Hospice is a Medicare funded service, usually for home, and they usually provide equipment if needed, medications (such as Ativan and morphine), a visiting nurse, 24 hour phone assistance, and the goal is to keep someone comfortable and not prolong life. Hospice is for someone who meets criteria, who is considered to be nearing the end of their life, ie six months, but people with dementia or progressive illness with increasing debility and needs can qualify, often for a few years. On hospice, one usually doesn’t continue regular doc visits or specialist visits but one can go ‘on and off hospice’ if one wants to go to the ER or have something addressed. They really try to keep people at home. Anyway, you can talk to her doc about which referral might be appropriate to get your mother relief at her particular stage. I hope you can find a solution.

[ARutzen in reply to Martina_MP]

Thank you so much for all this information. Sometimes I feel like I have no idea what to do, but this really helped. Thank you!

[Mariawatters]

Hi ARutzen . If she has an infection or abscess in her mouth they normally have to give an antibiotic to get rid of the infection before they take the tooth out but 2 weeks does seem a long time it’s usually about a week but I’m not sure ...I have CBD and have a lot of pain in my left foot and hand . I am on pregabalin for the pain and clozapine to help with the restless legs , there are days it’s worse than others but I think they help ? I’m in Ireland here ...... hope your mum gets some release

[ARutzen in reply to Mariawatters]

Hi Mariawatters,

Yes the did give her some antibiotics for a week - for the infection. Last night she told me if the infection goes away and she does not need a root canal, they won't do one, but I also found out the 2 week appointment is only to see a surgeon to set up a root canal if she needs one. Which is almost more frustrating, but she said the pain meds last night gave her some relief.

I don't want to pry, so please don't feel like you have to answer this question, but the pain you are experiencing (since I'm not sure how mom is really feeling) is it something that is constant throughout the day or only when you haven't been moving that side as much? Sometimes I think she doesn't want to tell me she's hurting because she knows I have to work and can't rush home for every thing, but I don't want her to sit in pain all the time.

I think she's tried clozapine and said it didn't have an effect on her, but I can see about the pregabalin for pain. Thank you!

-A

[Mariawatters in reply to ARutzen]

Ask any questions you like ! . Remember it helps me to talk about this also . I have had CBD for around 7 years possibly more and have only just discovered this page .I have now learnt it effects people in different ways ...I only feel pain when I’m on my feet , luckily not when I’m sitting down Some days it can be fine and other days every step is agony I am on 50 mg of pregabalin twice a day and 25 mg once a day .... My left hand use to have dreadful spasms and lock if I held a phone etc too long but it was at nighttime I had the most discomfort as I didn’t know what to do with my left leg . It was so restless and I think the clozapine helped with that although I am on 25 mg of amitriptyline also which I take at night so maybe see would that be something that might help her ?

I am also on 75 mg 5 times a day of sinemet which is for Parkinson’s I believe . I was prescribed that as I was first diagnosed with Parkinson’s and my consultant thought there was no reason to come off it .

I have tried to come off some of these drugs myself over the years and even believed I could cure myself with different diets etc I even tried the Keto diet lol but to be honest I just felt dreadful so had to resume my medication ...

Maybe someone else can offer you some other advice on the way your mum is feeling as I say everyone is different with CBD .... Good luck , she is so lucky to have you looking out for her . x

[ARutzen in reply to Mariawatters]

Thank you, yes it helps to talk about it for me too even though I am not dealing with the disease myself. I need to see what medications she's on and what she has tried. I feel like the Parkinson's medications they gave her earlier didn't help. I'm so sorry to hear you are in pain! I can't imagine how hard it is, but I think you and my mom are in very similar positions. Just the other day she was in a lot of pain after holding her phone for a while, I hadn't seen her react like that before, but I could tell she was hurting when she tried to open her hand. Her left leg is dragging significantly more than it was even a month ago. I'm not sure if she has a lot of pain with it, I think she's unable to really feel that leg now, but I notice she has trouble getting in and out of bed more and more. She was telling me that she just has no strength to really push herself up, although I know she keeps trying no matter how long it takes.

Thank you for all your suggestions and information - I will talk to her about some medications and see if I can get her anything different. All my love & prayers to you

-A

[Martina_MP in reply to ARutzen]

A, She might benefit from a ‘bed assist rail’ so she can pull up from lying to sitting, and it also helps with standing up. The one with feet on the floor is more stable. It was a great help for my mother at that stage.

[Birdlover415]

I sympathize with you about your Mom’s situation. Regarding the pain that she is because of the CBD rigidity, has her doctor offered Botox? I also have been diagnosed with CBD and I get shots of Botox in my affected arm and hand every 3 months. It does not enable me to use my arm but it does relieve a good amount of the rigidity and pain. I also take Baclofen to help reduce stiffness and spasms. I recently changed doctors myself because I didn’t feel I was getting the support I needed from my original doctor even though I really liked him. I hope you find some solutions for your Mom’s issues.

[ARutzen in reply to Birdlover415]

Hi there - I did hear about Botox... have not looked into that, but good to know that it at least relieves some of the pain/stiffness. I'll have to see if she's interested in trying that. Thank you for the suggestion!

[Cuttercat]

Call a dentist who will come to you!!! We did for home visits for years. Yes, expensive, but.............She is worth it! Do it now.

[ARutzen in reply to Cuttercat]

Yes we'll have to do that going forward I think. She really likes her dentist, but he is so far from where we live now.

[Cuttercat]

at Home Dentistry is so nice since the personnel are used to this type of setting and the situation. Good luck.

Cuttercat