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Anela

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Reply with quote  #31 
Quote:
Originally Posted by drewswife
We can really identify with what you mentioned, Moontears, about the myriad of symptoms.  My husband describes it as a "revolving door"--if he isn't nauseous one day, then his knees are hurting or he's super fatigued.  This is what has made CVS so difficult for us; he rarely has a good day.

Robin--Does your husband still have a lot of chest pain?  Drew also suffered from terrible reflux but after starting to take Carafate Suspension, he has really experienced improvement in his esophagus.  I wanted to share this, in case others also have esophagus pain and/or bad reflux.


I know this is six years old, but I have had pain in my knees since I was fourteen - pain that radiates up and down my leg, into my foot.

I also have the alternating health problems, that are annoying. Add in cramps every month, and I'm in a lovely mood.
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RobinD

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Reply with quote  #32 
HI-
yes Dave gets very bad pain- unexplainable pin. Mostly in his knees and legs- but he also gets back pain. When he gets jaw pain - we know he is most likely about to go into a cycle. WE recently tried the CBD oil from Epiq and it did seem to help the jaw pain go away and he did not go into an episode. He usually gets the most pin a few days before an episode. Sometimes it leads into an episode.  He has been doing better with the higher amitryptiline , coq10, good medical marijuana, and the cbd oil. HE still takes alot of other meds- valium, ondasetron, singular, and oxycotin. Wish they'd come up with a natural cure/help to this. The meds are all taking a huge toll on his body.  
Hope today is a good day-
Robin


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ginny

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Reply with quote  #33 

Robin, does MA have any dispensaries open?  I did not think there were more than medical cards issued.  epiq is online and I just saw cbd e--- is that with vitamin e? 

Any chance you can repost in the Adult forum how you are managing with this mix of meds, supplements and medical marijuana and CBD oil?

Thanks!


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RobinD

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Reply with quote  #34 
Hi Ginny-
No there are no dispensaries open but we are allowed to have a caregiver who essentially has what they have and you are legally allowed to buy from them. So for now that is how we are doing it. YEs I will repost in adult forum- 
Hope you are doing good-
Robin

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RobinD

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Reply with quote  #35 
Ginny- how do I start a new post. You'd think after all these years I would know--
Thank you

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Daisy

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Reply with quote  #36 
Hi my daughter has suffered with cvs for 3 years now and the past 6 months she's crying with pains in her joints especially her knees, she is awaiting to see a specialist her fatigue is really bad to.  My daughter has non stop vomited since September 2017 and is still vomiting today. I just wish there was more awareness for this syndrome. 
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wynnak

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Reply with quote  #37 
Daisy, has she had genetic testing? What kinds of tests have they run on her? 
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Blynda
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ginny

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Reply with quote  #38 
One of my kids seemed to have juvenile RA but this was ruled out.  Decades later she is positive for RA and Crohn's.  Crohn's can affect any part of the digestive system, mouth all the way down.  Have the auto immune tests been run and run again?  That is a terribly long bout of vomiting

Robin, I missed your question. Top of the page you will see New Topic on the right side.  Click on that and you can begin a new topic in any of the forums, main, adult, etc.



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ginny CVSA Moderator
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