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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone Been Diagnosed With Allodynia? If So, What Treatment Do You Receive.

A MyFibroTeam Member asked a question 💭
Lake Barrington, IL
January 17
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A MyFibroTeam Member

Tactile Allodynia is a symptom
Of fibromyalgia so I would say if you have fibromyalgia, it’s just one of the many things we have to cope with. I first noticed mine after a gallbladder removal surgery which is when my fibromyalgia slowly started to come on. I had burning and pins and prickling feelings from my ribs down my hips and into my thighs really bad. As time went on that went away and then I developed it around my low back pretty badly for some time. It’s gotten a lot better (I am over 2 years post surgery now) and again, I think the LDN helps me with this as well.

January 19
A MyFibroTeam Member

I have this and it comes and goes. It seemed to get better when I started 4.5mg of low dose naltrexone. It has helped all of my symptoms. I know my triggers and I avoid them too, though. Tight clothing is a big no no for me like compression clothing like leggings or any bras - forget it! haha. Some people take gabapentin or amitriptyline and that helps. It may take trying some things. It would help to talk to a doctor you trust and see what they think could help you!

January 17 (edited)
A MyFibroTeam Member

That’s too bad, I’m sorry to hear that for your friend.

I’m not sure, actually who treats what with it. The allergist I saw before might have been both. I’m actually over it for now. Just because a physical therapist brought it up doesn’t mean I should be “going there” with it. I mentioned the timeline of everything with all the providers/disciplines I’ve seen and no one else besides the DPT mentioned MCAS. I do trust my diagnoses and honestly am so burnt out on the medical front, I’m going to let it be for some more time. I have FMS/MPS/HSD so naturally I have a lot of problems 🫠 but I am able to do a lot and I’m really good at pacing myself and taking care of my sleep and stress and all of that has helped tremendously.

March 3
A MyFibroTeam Member

The medical burn out is real and can add more stress which isn’t good for our bodies, either. I have found it’s best for me to make appointments (but chill in the mean time) and approach it with grace when the time comes. I’m going through it again now with an allergist as there have been some mcas concerns long before my fibromyalgia. I’m not really looking forward to the appointments and med trials etc but I do want answers.

February 20
A MyFibroTeam Member

I’m so sorry, that sounds very painful. I see a pain mgmt Dr. For my LDN. My primary care doctor could also prescribe it. I have seen a rheumatologist but he wasn’t helpful at all. I don’t have anything he can treat so my pain mgmt Dr is it. I found her through a local university hospital - the rheumatologist actually refers to her because they don’t typically treat fibromyalgia. I hope that helps and you can find a provider you trust and like. If it helps, my pain mgmt Dr is through a pain and spine group :) and they treat all kinds of chronic pain disorders.

January 21
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