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new here, feeling so isolated, hope others understand....

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Fibromyalgia
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Posted 4/23/2014 4:45 PM (GMT 0)
Hello everyone! I have been feeling so isolated from the limitations my health has been putting on me recently, so I am trying to reach out more to people who would understand, I found this forum and have been reading the fibro 101 post and just generally trying to get more info.

I was diagnosed with FM 3 years ago after the birth of my daughter, but I have struggled with multiple chronic illness/pain conditions for over 20 years including IBS, Endometriosis, Interstitial Cystitis, Gallbladder disease, Colon Polyps, Celiac, etc). I am currently working with both functional doctors and a rheumatologist and have researched the heck out of this disease but I am feeling just so isolated socially and nothing we have tried so far has worked very much. I am using up all the energy I have working and taking care of my family, I don't have much left for going out with friends and even the more supportive ones really have no idea what I am dealing with.

I am so glad I found this group! I haven't met anyone IRL with Fibro and just to read and be reminded I am not alone is already a great help! I would really welcome any feedback or ideas of what worked for them, especially for people who also have severe stomach/digestive issues alongside this and find it hard to tolerate a lot of meds.

Thank you for reading :)
Posted 4/23/2014 4:48 PM (GMT 0)
I am very sorry you are dealing with fibromyalgia. It's such a daunting illness because there is often uncertainty as far as what the day or what tomorrow is going to bring in our lives as far as pain levels.

What things have you tried so far? Once you share that, we can see if others can add ideas for you without repeating the things you've already attempted.
Posted 4/23/2014 4:57 PM (GMT 0)
Hi, Quinn, and welcome! I have many health problems, including Crohn's disease. I list many of them in my signature below. BUT I have had a full and enjoyable life in spite of fibro. It can be done. You just need to find what helps you be in control of your pain.

I didn't choose to take Cymbalta, Lyrica, or Savella. I wanted to go a more "natural" way of handling pain...if possible. It worked for me but it doesn't necessarily work for others. We are all very different and what we take to handle our pain. I think you will find that out from responses.

I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer caller Robaxin that has made a significant difference in my pain. I also do daily stretching exercises, I walk and/or swim daily, and I pace myself when doing things. Gentle massage has helped me too, but accupuncture did absolutely nothing for me. (Some members get help with accupuncture though.)
All of the above has helped me keep in control of the pain.

I also am a positive thinker and that has helped me almost as much as any medication. Really! Studies have shown that people do better looking at the positive things in their lives. There is a good link in Fibro 101 about maintaining a positive attitude when you have chronic pain. I have read that one a lot when I am having a bad day. Also, when I AM having a bad day I remind myself that fibro waxes and wanes so I will be having a good day soon. I don't focus on the bad day.

I see you are reading Fibro 101. All of it is good and I hope you find some tidbits to help you. There are links about the supplements I mentioned above and how they work in the body. Many members have gotten some relief using these too. We do have to be our own advocates with this illness so it's good to learn all you can about it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 4/23/2014 5:17 PM (GMT 0)
I appreciate the quick replies!

I also have a strong preference for working with more natural/integrative medicine and fortunately I live in a great place for that! The functional medicine doctor I am currently working with has a theory about Gut Permeability (leaky gut), Candida and Small Intestinal Bacterial Overgrowth causing ALL of my auto-immune reactions/diseases, so we are currently treating me with anti-fungals, a VERY low sugar/carb diet and soon a specific antibiotic for the SIBO. We also tried Low Dose Naltrexone, but my body didn't' tolerate that well at all.

Sam-E has made some small improvements to my depression, so I am also on that.

I also am currently on amitriptyline (10mg) via my rhumetologist, but it doesn't' seem to be doing much of anything. I was glad that my body could tolerate it, but other than making me groggy in the morning, I haven't noticed much of a difference and its been a few months. I haven't tried the specific prescribed drugs like Lyrica, Cymbalta, Savella yet, but I think that is probably next, I am meeting with my rhumetologist on Friday and I think that is our next conversation. any feedback on any of these or ideas of which worked better for individuals also welcome :)

I have added Vitamin D as I was very low in that, but I didn't seen too much of a difference in symptoms. The Magnesium is something really interesting and I will definitely explore that more.

Exercise has been super challenging, I used to love to be physically active, but I am having a really hard time fitting it into my schedule and not being too exhausted to go. I forced myself to give up all sugar and carbs for the last 5+ months so it definitely isn't a willpower issue, I just feel crappy at the times where it would even be possible (late evenings).


Thanks for the positivity comments, i did read that link. Part of what has really been hard about Fibro is that accompanying depression. It came when my daughter was born but even with some treatment never abated.
I didn't have depression previously, despite other pain conditions (more of an anxiety girl myself). Its hard to keep positive with the depression and I haven't had it for long enough to have great coping techniques for this type of negative thinking. I am working on finding a therapist, so I am sure that will help. (depression meds and me don't work well together, and yes, I have tried pretty much all of them in the last few years).

So that is what I have done so far, I am totally open to new suggestions, both on the natural/holistic side of the house and people's experience with the mainstream drugs which I realize I probably am going to need to give a proper try to pretty soon.
Posted 4/23/2014 6:04 PM (GMT 0)
Water aerobics/walking helped me significantly. I had to work up to a full work-out, but it helped manage energy as well pain. If exercising cannot be done at the end of the day, you might want to try to manage it earlier. It is important, at least in my opinion.

Amitrptiline didn't do much for me. Remember to give each med a try for at least 6-8 weeks, before deciding whether it helps or not. I did not react well to the fibro-specific drugs. A muscle relaxer at bedtime was the best medication I tried, and have stayed on.

Lastly, the most important thing is to know yourself, and what you can do or not do. Saying 'no' is okay, stopping to rest is okay, and letting some things slide is also okay.
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