Who else is living with Mixed Connective Tissues Disease

Posted by flipmodejen @flipmodejen, Mar 23 5:00pm

How are you coping? Can you give any suggestions to dealing with this? I’m open to any suggestions or advice.

Thank you

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I use topical NSAIDs. Moist heat also helps me. I am on opioid medication and muscle relaxer. I don’t think the pain ever goes away but you can get the pain to go away a little bit so you can tolerate it.

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I'm 55 and have had to obtain meds from outside the USA becasue doctors are arrogant and not interested in helping me unless I am curled up and folded in pain. I gave up, had to quit my job, and everything is just a blur of debt now! I need to find doctors who care and who are competent, hard in this region...

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I think doctors don’t want to or are unable to prescribe opioids. I don’t think they understand

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@lindalou1958

I use topical NSAIDs. Moist heat also helps me. I am on opioid medication and muscle relaxer. I don’t think the pain ever goes away but you can get the pain to go away a little bit so you can tolerate it.

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Do you mind telling me what muscle relaxers and opioids that is prescribed for you.

Thanks for responding to my message

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You may want to look into LDN which is low-dose naltrexone for pain and autoimmune issues, as well as for many other conditions. See website ldnresearchtrust.org. for a wealth of information about using low-dose naltrexone, prescribing doctors, and compounding pharmacies
There is also a podcast--LDN radio show.
Linda Elsegood is author of several books on the subject of LDN.

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@willard123

You may want to look into LDN which is low-dose naltrexone for pain and autoimmune issues, as well as for many other conditions. See website ldnresearchtrust.org. for a wealth of information about using low-dose naltrexone, prescribing doctors, and compounding pharmacies
There is also a podcast--LDN radio show.
Linda Elsegood is author of several books on the subject of LDN.

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*** from my previous post…forgot to mention:
I am not sure whether low-dose naltrexone can be taken if you are also on opioids. Perhaps it is permitted with the low dosage which is off label for naltrexone, regular strengths.

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@mayermcchief

I'm 55 and have had to obtain meds from outside the USA becasue doctors are arrogant and not interested in helping me unless I am curled up and folded in pain. I gave up, had to quit my job, and everything is just a blur of debt now! I need to find doctors who care and who are competent, hard in this region...

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I go to a pain management specialist, who knows and trusts me. A regular doctor is paranoid about prescribing meds that actually help. So... I've been on tramadol 200 mg per day, for years. Since I don't ever take it to get high, and don't drink, smoke, or use any other drugs, she has no problem with me, and the tramadol has never lost effectiveness. Best of luck to you.

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