Newly diagnosed-fibromyalgia and connective tissue disease

[FibroOrchid]

Dear fellow community members,

I have been recently diagnosed with Fibromyalgia and undifferentiated connective tissue disease.

The treatment recommended by the rheumatologist is Amitriptyline and steroid injection. I have been on various medications throughout my life and I would like to know:

1. If anyone has been on the Amitriptyline and steroids and if you had any side-effect?

2. Has anyone tried any non-invasive/ natural ways which helped manage the fibromyalgia and connective tissue disease symptoms?

Thank you

[desquinn Partner Volunteer FMAUK Trustee]

Amitriptyline is a very typical first option for fibro. Steroids not so much but wonder if they are also thinking you may have polymyalgia perhaps.

[FibroOrchid in reply to desquinn]

Thank you, desquinn. The rheumatologist didn't mention anything about polymyalgia. But I will look it up.

[JayCeon]

According to studies, 30% seem to have pain reduction from amitriptyline. I didn't. It helped my sleep. But after 4 months the 8 adverse side effects stopped me taking it and I am all the better for that, having found many natural things for my sleep. After 60+ treatments I have found about 10 natural things which keep getting my pains down to pretty much zero and get my Ache down if I don't do too much in one go.

[Leemccluskey in reply to JayCeon]

What are the 10 natural things you take.? I think we could all do with some good tips. I seem to have adverse reactions to so many medications. I took a very small dose of amitriptyline 5mg and slept like a baby for the first time in years but then the following day had horrific anxiety that made my pains much worse. I didn't take it after that night and it took a good four days for my anxiety to calm down and I had the worst nights ever

[JayCeon in reply to Leemccluskey]

Hi Lee, wow, I'm surprised at that, never heard of anxiety as a reaction. Can you reconstruct how the anxiety started? Don't think I'm keeping my tips a secret, just read all my posts. It's just most need concentration and energy to do, not exactly something fibro is famous for. You can't just 'take' them...

My night tips are here if you haven't seem them yet...

healthunlocked.com/fibromya...

How I get there: I pinpoint each symptom, find the invisibly moving sweet spots of each activitity and try lots of different remedies time and time again. Doing something about any little symptom "now" is a key which might help me get back to work slowly.

My daytime-regime at the moment:

Main physio-treatments: Whole body cryotherapy plus acupressure twice a week 1.5 hours (osteopathy helped a bit before). My own stuff: Wim Hofs breathing exercise works a dream for me directly after every exertion against the Ache. Also cold showers (only 40-60 secs.) or cold washing wrists/underarms and/or thighs help feverishness/"flu" and fatigue/Ache. Putting legs and arms up for 5-20 mins several times a day. Nosestrip for more oxygen, getting more breath. I don't need to lie down resting any more, I do one or all of these as soon. (Unless I'm typing on my laptop.)

I'm not saying I'm healed, I do have to do these all the time. But I'm getting in control and more able to do things again with this condition from hour to hour, day to day.

But I guess that's not what you wanted to hear, or is it?

[MyMollie]

Hi I take Amitriptyline at night to help with my Restless leg and the Fibro. I also had steroid injections in my shoulder but after the first few they didn't seem to help. I think there is a lot of trying different combinations to see which help. I wish I could tell you the best combination but I am still hoping to find it.

Regards Elaine

[StarlingSilver]

If you’re interested I run a discord support group for invisible chronic illness

PM for link. (Edited by moderator)

[Freddie20]

Hello FibroOrchad

A few of the natural things that have helped with pain and sleep, are magnesium tablets, baths and cream the one with lavender and chamomile is really relaxing. A warm bath with magnesium salts before bed, and finish with the lotion.

I try to rest when I feel the fatigue creeping up, not always easy, but I have a theory that fibro is caused or at least made worse, by always been stressed and trying to be and do everything. Its probably the harshest thing to do, just relax and be, with meditation and acceptance. I have started looking into herbs and nutrition, and will blog when I find something useful. Have quit the vino and unfortunately it has made a difference, I used to use it to relax and sleep, but it ended up making the pain worse during the day. Vicious cycle. Not good.

Mindfulness is really good, it helps when I get frustrated with my situation or am anxious, both build pain.

I am on Duloxetine but with my GP I am trying to wean myself off, I don't like the side effects.

Have a look on YouTube at Vidyamala Birch. Lots of love and best wishes. X

[Skylightbluelinen98]

Hi I have been on Amitriptyline, and felt like a Zombi, couldn’t think for myself or get out of bed, so decided to come of it.