I could use advice for axiety meds, and pain meds, what seems to work for people?
For me, no anxiety meds : mindfullness is fine to cope with the pain and the stress.
Pain meds : no efficacity except ketamine cream.
Well believe it or not our family hates pills. And we really all would rather not take them. We would often try to ignore the problem and hope we could recover without a pill. So that is our overall attitude. But with severe chronic conditions pills become a part of your life that can be a hassle.
In the case of my mom she has been on a lot of pills long term, and that probably was a mistake, when they were geared toward anxiety and fear. In those cases the pills half the time probably did more damage than good. I could probably make that a separate topic and it gets to be a touchy subject.
My mom now takes a pill called Ativan, which is normally not prescribed for long term use because it's addictive and has side effects and withdrawal effects. She takes that to help her sleep and her body will not be as calm and be able to sleep without it. This would not be a positive recommendation for that drug or for long term use of it. It's just something we have at this time. Some drugs that affect the mind or help you slow down and go to sleep may become a part of the pattern. For my mom she has coughing and sneezing at times at night. Likely from a dry room and due to the way we use AC a lot which dries out the air. Because of this she at times takes cough syrup which may help coat and relief the person from coughing, but the side effects of some of them may cause additional drowsiness. And she will take an over the counter benedryl. I know these drugs are not anxiety drugs but some anti-histimines which may help with allergies will make a person sleepy and that sleep will help you deal with anxiety which may result from insomnia.
She also has taken some other drugs which may not be read as pure anxiety or mental health drugs, but are actually used off label to treat symptoms and pain of neurological problems like EM. One such drug is Cymbalta. It may not be considered as a drug for anxiety but it may be determined or looked at by some as a drug for some mental health like defects. So when your taking that drug you may find some who are in the medical field may use that drug in another context of understanding and interpret that as a more directed label use and diagnosis. For example I saw a comment in a very poorly written medical document that said my mom was being treated for "dementia" because she was taking cymbalta. Some people with dementia may be taking cymbalta for that, but it doesn't mean that a person taking it for pain from a neurologist who prescribed it for EM is getting it for a reason and to validate some mental health diagnostic opinion. Or in our case a "false diagnosis in a note". Which is another story. So some of these drugs which are being used off label can bite you in the end.
Some other drugs which mom took for anxiety were few and far between, and they were during periods when she didn't suffer with EM, so I'll leave them out. Other drugs supposedly taken for Anxiety were not even drugs which would typically be taken for that by most doctors but given for other conditions. We were told these were for fear and anxiety, but the medical records which were hidden from me were saying the drugs were being given for other reasons. Some of those drugs are heavy duty medications and not often given for anxiety, but affect the brain chemistry and can affect the nerves in other parts of your body. So I wouldn't even recommend them because they were to heavy duty and had potentially bad side effects. Their side effects often seemed to be worse than their help and with long term use, they presented other possible dangers to a patients health.
So I guess my summary is I don't have any experience with any good long term drugs for anxiety in dealing with EM. The ones we have taken seem to be less valuable or more addictive than we'd like them to be. But that is just our single experience here.
Ambien is a sleep aid that has helped me a lot. Unfortunately, the longer you take it the less it works. I think that the difficulty I have in getting to sleep is due half to the burning feet and half to the anxiety about burning feet. I can get into a very bad place wondering how long the pain will last, how bad it will get, is life really worth living anymore, etc.
One thing that is helpful, with no side effects (except to the wallet) is audio books. I have become an audio book junkie. There are certain narrators who’s voices I find to be very soothing. And certain types of stories that are just the right level of interesting to distract me from the anxiety but not stimulate my brain too much. I listen to them on my iPhone and set the built in timer for 30 minutes (sometimes repeatedly). Years ago I used a cassette tape player. Books on cassette have gotten pretty cheap if you can get to the thrift store.
Also, deep breathing exercises as I am trying to get to sleep have been surprisingly helpful. There are plenty of YouTube videos on this topic.
Ive suffered anxiety for years and became addicted to benzodiazepines. Managed to get off them a year ago. Also stopped imipramine, which I’d been onn for just as long. That’s when the EM showed up. So had to go back on the tricyclics imipramine as it was masking the EM symptoms. But on 150mgs whereas I was on 100. Now NO anxiety and feeling so much calmer with no side effects. Wouldn’t have gone back on if not for the EM but glad to feel settled now.
PS. Also the higher dose has made my terrible osteoarthritis pain feel more manageable.
I too have horrible anxiety and a great deal of it certainly is around how long is this flare going to last, when will the next one hit me, and trying to express myself to my doctors so they can understand the whole picture. Another thing that’s affected me greatly is the dread of summer. I have always loved summer and Infact moved to warmer climate by the ocean a few years ago so I could enjoy more of it. I’m trying citalopram right now as well as cyclobenzapine to try to relax. Have noticed I’m not so on edge, but still have that pit in my stomach thinking about summer