Anybody solo with Fibromyalgia?

[RV-Hopeful]

I have Fibromyalgia and was wondering if any other soloers (is that a word?) Deal with this? I'm not out there yet, but am researching, etc. Seems the perfect lifestyle for someone with fibro as you can go or not depending on how you feel that day ...

Consideration ... I can't sit stand or lie down for any length of time (sleep with sleeping pill) plus on pain meds & anti anxiety meds.

I think this lifestyle may actually help with fibro because stress is a big factor in the whole shebang. World stress, bill stress, urg ...

Anyway, want to hear from solos with fibro how they cope, etc.

Thanks!

 

[cyndi]

I have FM. And you're correct. I manage much better on the road than in a house.

 

[RV-Hopeful]

Thanks Cyndi for replying. I'm hoping to be mobile in 2017.

 

[cyndi]

Feel free to pm if you're more comfortable with that.

I'll be looking for you out on the road!

 

[Geos]

I haven't hit the road yet but '17 is my tentative launch date. My symptoms have improved tremendously since going mostly raw, low carb & gluten free. One of my concerns is I won't have the space & resources to continue a healthy diet on the road but where there's a will, there's a way. I'll probably go for a larger RV so I have the space for meal preparation.

 

[ArtW]

I don't have it but my ex did
One thing I do know is that in her case, exercise always seemed to help, at least for a while. She always said if she has=d the energy to stay active 24/7 her life would be much better
YMMV

 

[Kozi_Kidy]

Great question! I have fibromyalgia too and have been wondering if I'll be able to live on the road too. I'm fortunate that I found a medication that works wonders for me but I still have occasional bad days. And I know it will be a pain to have to come back for my regular Dr. visits.

 

[Jahmai]

I have Complex Regional Pain Syndrome and 2 other auto immune disorders....hoping to start being a monad by end of summer.

Sent from my SM-G935V using Tapatalk

 

[Blanch]

I have an autoimmune disease and I am full time. Symptoms are very similar to FM. I also have breathing issues related to Asthma or COPD depending on which doctor I talk with.

I opted for comfort, I have a large TT so when I am down for the count I am not in a small space. I have days where all I manage is a nap outdoors in my zero gravity chair. But it is all good! I am less stressed.

I have doctor visits every three or four months, medication that has to be overnighted somewhere every month and must be refrigerated. I make it work. I am better for it.

You can do this. I make mistakes and I learn from them. You will too.

Before I moved into the RV and started this life, I felt like I was just waiting to die, being full time has given me a peaceful and happier existence.


Sent from my iPhone using Tapatalk

 

[Jahmai]

I have several disorders all auto immune related the worse being Complex Regional Pain Syndrome. This spring I started thinking about packing everything up and moving into my car till I can save enough for something larger..probably a van. I have an old Subaru Outback so making a bed with back seats down will work out pretty easy. I too, thought, well I could stay put and watch money fly out each month for rent and utilities or camp and save. So I am working towards packing it up.

Sent from my SM-G935V using Tapatalk

 

[CautionToTheWind]

My symptoms have improved tremendously since going mostly raw, low carb & gluten free.  One of my concerns is I won't have the space & resources to continue a healthy diet on the road but where there's a will, there's a way.

A lot of thought on my part about finding healthy options on the road. Not all food is created equal.

 

[RV-Hopeful]

I haven't been here is a while and was pleased to see so many responses! As it turns out I'm not going to be in an RV ... but a conv. van which (in my mind) eliminates some of the concern I had about FM and RVing. However, I wonder if the small space will be too confining for me because (as has been mentioned here) sometimes getting around is an issue ... some days movement is next to impossible. I watch a lot of nomad videos and they are all out and about, hiking, visiting, walking etc. I have a dream this could be me ... and I believe it can be.

Hope to see ya'll on the road soon.

 

[RV-Hopeful]

A lot of thought on my part about finding healthy options on the road. Not all food is created equal.

Isn't that the truth!  I also think it could be a challenge finding healthy options but I'm hope to have decent refrigeration to sustain some of the healthier items for longer periods of time.

 

[Blanch]

Even a crummy day where I get nothing done and do nothing is better for me as a nomad. If all I do is nap, at least I nap outside with sunshine and a nice view. I no longer have to look at a messy house or unmowed lawn and beat myself up for not getting things done. I am my illness and it is me. Lacking my former responsibilities allows me to live at the pace my illness dictates. I don't have to try and be who I used to be.

On a side note - we with chronic illness would have the most boring YouTube channel. Other channels they go out and hike, mine some days would be "watch Blanch nap outdoors".


Sent from my iPhone using Tapatalk

 

[RV-Hopeful]

Even a crummy day where I get nothing done and do nothing is better for me as a nomad. 

That's what I need to hear! I think I'll feel better once I'm on the road, at least I hope so. I'm moving end of this month and hope have the van ready to go for 2018 RTR. When I accomplish that then I'll know I'm ready to hit the road. Hope to meet you Blanch.

 

[Blanch]

That's what I need to hear! I think I'll feel better once I'm on the road, at least I hope so. I'm moving end of this month and hope have the van ready to go for 2018 RTR. When I accomplish that then I'll know I'm ready to hit the road. Hope to meet you Blanch.

I'll be there. Last winter was great! I am ready for many more sunshine filled winters. See you soon!


Sent from my iPhone using Tapatalk

 

[IanC]

I'll probably go for a larger RV so I have the space for meal preparation.

You don't need much space to cook well. I have a very small working area and I make full meals every night - curries, stews,, Asian, etc plus usually full breakfasts - all multiple fresh ingredient meals. With my oven I've even baked bread, biscuits and muffins on the road - all scratch. Food is one thing I don't compromise on.  Face it, there's not a lot to do, so taking time to cook is very enjoyable, even though it requires some juggling in a small space. Time - we've got nothing but.

As far as pain goes - I haven't had the chronic lower back, shoulder or knee pain since I've been on the road - even driving long distances. I sleep better and depression feels like a thing of the past.

 

[BluebirdHazel]

I don't have FM but I do have an auto-immune disease. I started another thread about Health/Illness/Chronic Disease.

Generally life on the road is more active and a healthier lifestyle, don't you think? The smaller the space you have, the more you're outside and moving in the fresh air.

My disease, Microscopic Colitis, is controlled partly by diet. Finding healthy, whole, organic foods in all places is a challenge and expensive; storing them in quantity when I do find them takes storage space. A decent sized fridge/freezer is crucial for fresh veggies and fruit and berries. 

Cooking in a tiny space has been fine. First and most important, I keep meals as simple as possible......no fancy recipes with all kinds of ingredients, just plain food. A sweet potato is good the way it is!    I use the dinette table for prepping, cover the sink with an insert, and cook on only one burner on our induction plate. It just takes planning and time......and we have lots of time in this lifestyle!    We do have a microwave/convection oven and a small table grill too. Making meals for someone else as well can be hard on the days our foods differ drastically or on the days I'm extra tired. 

Another part of my disease management is relaxation.......breathing, meditation, mindfulness, yoga. All of that has been doable even in our small RV, sometimes on the bed or floor or outside on a mat. Sometimes people stare at me doing yoga or sitting meditating but that's their problem; I have to do what keeps me healthy!  

Controlling stress was a huge issue for the first few months of fulltiming when we were just learning everything. And stress is a huge factor in auto-immune diseases! I would get wound up over packing, moving, travelling, navigation, traffic. I think it's better for me if I stay in one place for a longer time, 2 weeks to a month maybe.

My illness started the day I moved onto the RV after the extreme stress of selling everything we owned: house, barn, outbuildings, 14 acres, furniture, possessions. That all happened in 2 months! So I don't know how I would feel if I still lived in a sticks and bricks house. I'm managing and enjoying myself most days so I guess it's all good.

I'm so glad to know that others are coping.....and thriving?......on the road with chronic illnesses.

 

[SeekingPeace]

I am in a similar place.  From my experience when I full- timed in a Class A motorhome--- the space is helpful.  The ability to lie down as needed is imperative (if you keep your bed up at all times in a van, that should work.)  To have the space to be able to lie flat and stretch hip and back area is imperative (the bed can work usually, if there is no other space.)  For me, an exercise ball is needful to stretch my back and neck.  Again, space... A Class C might work well, but I would avoid a corner bed (trying to make it is a pain) or the cab over sleeping-- if you are like me that is an invitation for disaster for a the middle of the night bathroom run!

HOWEVER, the issues that concern me now (things have changed a bit...) and might you are dumping the RV and the ability to drive something so large... Dumping because of my neck.  Certain positions cause a lot of pain and hours of after-effects...  I didn't have that issue when I was FTing before.  Driving a larger rig because of the stress.  Once I was used to it, I never had an issue with stress except in lots of traffic or on narrow streets (I also towed a car), or a particularly gnarly thunderstorm complete with hail through a tight highway construction site in the dark lit by intermittent blue lightning (absolutely beautiful but scary as heck!)  I would be the first to reassure you that you can do it!  But, honestly, the thought stresses me now...  

I think it might be helpful to be able to stand up in whatever rig you get, RV-Hopeful.  Being bent over for any length of time causes pain and challenges for me.  That may not be your situation!  

Here's hoping we both find the right vehicle and are on the road soon!  If I can be of further help, don't hesitate to contact me.

 

[tripper]

Look up the YouTuber RV Joey, she has Fibromyalgia and seems to have it well undercontrol, she talks about what she does to control it, plus some cool RV stuff.