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Finally diagnosed: Suggestions?

Dec 19, 2015 9:35 AM

Hi guys,
I have just joined due to finally being diagnosed a few days ago.
I knew a fair bit about Fibro before being diagnosed however I am looking for any suggestions on pain relief/methods I can use at home.

I have the Physio, pain clinics and first try of medicine (Baclofen) organised but havnt started anything yet.

Can you lovely people help me out? My pain is constant and getting worse. I also have an 11 month old (very active) baby who needs a lot of energy from me which I just don't have.

Any suggestions?

Thank you :)

Dec 19, 2015 10:02 AM

First off welcome.. I'm sorry you have to deal with this however this is the best place to be in my opinion. Let me start with your 11 mo old. I worked as a nanny for many years all while having these pains. Whatbi did with hyper energetic children is I would get as much rest as possible. I would plan a day that worked for me and that child. And I also would have a deginated safe play area. Low to the ground with safe edges . this could be anything from pillows to blankets or even a play pin area. I would the have a seating or laying area for me to be on so if I'm in a lot if pain I can be in a rested position while still engageing the child. I would also do things outside short walks ect. Also I would arrange vplay dates with another child or take the child to a play group. So that way you have another adult and children to help entertain your child. And also tire them out.lol
As for Medicine I'm on lyrica as my first medicine. And tromadol although it does not work very well right now. I also use muscle rubs for the hard pains. I don't use then all the time since the burn that comes when I apply is pretty bad.
I hope this helps and I'm sure the rest of the family has some.great idea to help you through. Also this group is full of great listeners. So if u have a bad day or a question or just want to vent something out. We are here.
I'm hoping you have a low pain day .

Dec 19, 2015 10:11 AM

Lately, what has helped me is sitting in the shower about 15 min or so 2x day, I usually do morning n evening. I'm on lyrica, which hasn't seem to be helping lately. I stick to my muscle relaxer norflex during the day as its not drowsy along with ibuprofen. Reading about it and willing to adjust what hwlps at thw time, and this chronic family really helps. I hope u find some relief finally diagnosed

Dec 19, 2015 12:12 PM

Thank you girls, your information really helps.

I will be starting Baclofen (muscle relaxer) after Xmas. I'm starting it then and not now because I usually have a week or so of horrid side affects on new drugs and don't want to ruin Christmas as im hosting this year!

I'm actually scared of trying Baclofen as Iv heard you shouldn't do anything that requires your muscles whilst on them. How am I supposed to do that with a baby lol!

Being 25 and off work due to having the little one makes it a lot easier to rest and relax. Even though she is a very active baby, she is also a very easy baby and she sleeps a lot! So I'm very luck in that area!

I'm worried about when she starts running around though, I'm scared I won't be able to run around with her.

Dec 19, 2015 12:23 PM

Well u may not however there are adjustments you can make to combat that. start looking for toys for older children that proved an enclosed area for her to play but yet you can be seated. There is a video about a lady in a wheelchair and she has certain accommodation that her child uses so the mom can still play with him.. Using inter tubes and mini bouns houses. But you are a good mom so I have no concern that you will find a way to continue to care and play with your child. Even if it involves pain. You'll do it. But in the meantime just relax when u can and love on that baby..

Dec 19, 2015 1:17 PM

Oh she isn't missing out on anything because of my pain.
I know I shouldn't but I fight through it to make sure she's happy, even if it means I can't move when she's finally in bed for the night!

It's all neck and back pain so just using heat bags, pain creams and the occasional painkillers at the moment.
I was on codiene for quite a while that helped a little but I refuse to take them now as I believe they have damaged my stomach lining.

Any tips on what else I can use at home?
If anyone can give me any suggestions on what I could do to tackle the fatigue, I'll hug you! :D

Dec 21, 2015 10:37 AM

Welcome to our community family FinallyDiagnoded! Having a small child with chronic pain or any medical problem is a challenge itself. I had 2 neck surgery in the 90's, and was unable to pick my baby up. She learned to climb into my lap or onto the sofa/chair by mimicking her sister. She also learned to walk at 10 mos. I had to adjust things to allow me to be safe with my back but participate with her. We did a lot of games (choosing colors an shapes from flashcards, matching ones too) where I didn't have to sit on the floor. My brother in law have us an old school desk which was placed beside my chair. She thought that was awesome to sit in a desk like her sister did at school! I scheduled movie/tv time, nap time, snack time; everything was on a schedule that allowed active & restful play activities. And when she napped, so did I. Tea parties were with her this tea set, but real foods. It may take time to tweak a plan that works for you.

I have a group of doctors that help me; PCP, rheumy doc for fibro & sjogrens, endocrinologist for thyroid, psych docs (anxiety & depression), Ortho & pain specialist for spine, Urogynecologist/GI/Colon surgeon for pelvic floor dysfunction (bowel & bladder), cardio/ pulmonary/allergy specialists for asthma, heart, pelvic & leg vein reflux issues. A team is important when you have multiple issues. I take gabapentin, Parafon forte (muscle relaxer), Tylenol Arthritis or Aleve, and occasionally Tramadol for my fibro. Rest is important, even if it's sitting and reading a story with your legs up. Pace your activities, allowing 5-15 minute breaks, and ask for help instead of letting yourself get overtired. Take everything one hour, one day at a time. (((Hugs))) & prayers you'll find the method that works for you! 🙂🙏🌼

Dec 21, 2015 10:40 AM

Oh I forgot, a outgoing stretch (gentle) before getting out of bed, and before going to bed helps lumber up. And a warm shower helps with the morning stiffness. 🙂🙏🌼

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