FT wih Fribromyalgia? - RV-Dreams Community Forum

maddogscot · RV-Dreams Community Member

FT wih Fribromyalgia?

Jim01 · RV-Dreams Family Member

We have a friend who has Fibro, and she and her husband have been full-timing for about 6 years. In their case, they have her meds sent to their son's house and then he sends them to where ever they are.

As for doctors, they schedule themselves to be back in NC every 3 or 4 months to see her regular doctor, and they also have a doctor down in FL, where they winter. If you carry a copy of your medical records with you, you should be able to get care where ever you are. We have used walk-in clinics all over the US with very good results.

Many people use chain pharmacies for their meds, (like Wal-Mart or Walgreen's), and others have them sent right to the park that they are in by UPS or Fed-X.

Our friends did end up buying a Diesel Pusher MH with air ride suspension, which was much more comfortable for her when her fibro was acting up.

There are many people who full-time with severe medical problems. It may be difficult, and you may have some limitations, but it's better than staying in a stix and brix house and not living the dream. In fact, many people, (our friend included), have had less health problems than they did before they started full-timing. Getting away from the pressures of living in a house and living a more relaxed lifestyle does wonders. smile

I'm sure other people on this forum will be able to help you even more with your concerns.

Jim

Froggi · RV-Dreams Family Member

Welcome to the forum, Helene. I started full-timing solo in October of 2007. My Fibro was dx'd about 12 years ago...at that point I thought I would end up on disability before the year was out. Tried all kinds of meds, nothing worked all that well until Ultram (I was one of the lucky ones that could tolerate it).

That combined with going on part-time and trying to get as much stress out of my life as I could mixed with aromatherapy and guided imagery helped me. I learned to live within my limits as well. I have osteoarthritis and have to try to not overdo or I pay for several days.

Anyway, I am full-timing in a 26' Class C with a small trailer for my motorcycle. I may be trading in the trailer/bike for a car soon since I am finding that I tend to not bother unloading the bike and thus don't do as much sightseeing as I could.

AnnDon · RV-Dreams Family Member

Hi Helene - I too have FMS and OA, along with 20 other diagnoised disorders. One of the biggest reasons we are going full time is for our health. When we went to our sons graduation from Army boot camp in SC (we are in Pennsylvania at the moment, still selling off our possessions), I was sweating buckets but my fibro and OA was much better in the heat.

Also less stress helps me a lot. I can no longer take care of my chores (as few as they are) in our stix house, so moving into a MH requires less physical exertion on my part.

I only have 3 hours of energy to spend a day. I can use it all at once or spread it out. If I over do it, I am down for 3 or more days. Last spring I spent nearly 3 weeks in bed because the chilly cold set in and I could not get warm, and then I ache.

With a motorhome, if I don't feel well, my dear hubby can drive, I can walk back the hall and do what I call a "Crash and Burn" which means drop into bed and stay there. Also the toilet is only 3 feet away, so when my colitus and IBS are giving me trouble, I have less distance to go. Thank goodness for my supportive spouse (he has 3 ruptured discs and arthritis also) but he is very helpful and understanding.

A few years ago, he took a few week course as a nurse's aide, that made a difference too. And the less STRESS, the BETTER!!! No more property tax, no house or yard to take care of. The only bills we will have are vehicle insurance, licenses, etc. And what we wish to spend where.

It is just him and I with our two cats (which are therapy for me). My one cat "Zeus" refuses to leave my side when I am feeling bad, which is a good thing because I know in my heart if I was really bad he would try to get someone's attention, to get me help.

Also I have found out "Less is More" and with our coach we can follow the weather, and with Fibro (FMS) the weather does make a difference.

Blessed Be too you, I will keep you in my thoughts and prayers. Ann

AnnDon · RV-Dreams Family Member

Froggi - I still have my motorcycle license. I don't trust myself on 2 wheels, so the hubby made me sell my bike and now I have to ride behind him. But, when we can afford to I want to find a small trike, bike with a side car or service car type bike that I can be-boop around on. I just need to be able to haul my guitar or laundry on it but wish it to be road legal, so I can run errands if need be. We are trying to find a trailer to haul our harley dresser, but hoping to find a trailer big enough to accommadate a small trike too. Most trikes have reverse, so won't be too difficult to load and unload for me. I did make the hubby promise that my bike would be closest to the door, so if his back is acting up, I can still get my trike out. Maybe a trike might be something to give some thought to. Good luck in what ever dissission you make. Ann

pierreandcolleen · RV-Dreams Family Member

My husband has FMS and he is also a physician who specializes in Chronic Pain. He stretches daily, he keeps his activities within a level that works for him, and he naps when needed. He has also written an article on FMS that some of you might find helpful.

http://pierreangier.wordpress.com/2009/08/02/expert-advice-on-fibromyalgia/

-Colleen

GiniaJ · RV-Dreams Family Member

I found all of this interesting as I have Lupus (diagnosed in 2002 but likely there for years and years) and Fibro, diagnosed only 6 months ago by my Rheumatologist. I think it comes hand in hand with Lupus in some. My Lupus is completely controlled and in fact, in remission. The Fibro makes me hurt all over, but mainly in the morning and then sometimes if I've had too hard of a day. I take 2 pain pills in the a.m. and mainly that is it. Sometimes one at bedtime. I mean prescription pain pills.

I stay out of the heat of the day for Lupus, cannot tolerate the humidity and heat of Texas, but the Fibro feels better in the heat. We found Santa Fe, NM to be good for what ails me.
But we are STILL traveling.

We are doing fine in our Travel Trailer and other than nutty drivers and a few on the road issues, stress has eased up so much. We LOVE it. We are only beginning this life, but I swear that I am NOT going to give up my dreams for any illness.

As a cancer survivor too (stage IIIc melanoma - it had spread to 5 nodes), I feel so very blessed to simply be alive. The Lupus was bad a few years back and tried to steal my life from me too, along with all the enjoyment, but it is in remission and I am going to enjoy the reprieve.

I will have my son send me my meds instead of dealing with the hassle of out of town pharmacies, and I have my 6 month check up at MD Anderson Cancer Center that I will always go to, and see my Rheumatologist when in TX for that. Otherwise, I know what i need to do to keep healthy and happy and will do it.

Keep all of these posts in mind when making your decision as to whether you travel or not, but I say GO FOR IT! You can do it.

GiniaJ · RV-Dreams Family Member

Glad I read about this. I went to the site you posted and ironically, think I saw this a while back. I plan to order the book. This pain of Fibro is WORSE at times than the pain I had with Lupus and I was crippled with that 6 years ago and barely able to walk.

I used to call this "Whney Woman Disease". Boy have I quit doing that now that I know I have it. Funny how that happens.

Anyway, glad I read this post.

Have to read your journal next.

Jeannie Miller

Teecee · RV-Dreams Community Member

ask your doctor for Savella miracle drug for Fibro.

nwlambear · RV-Dreams Family Member

I have Lupus (diagnosed in 1990's)around the time I had a surprise heart attack (1991) and Fibro, diagnosed by my Rheumatologist (also in 1990's). I don't know what it was with that period of time in my life....I was also diagnosed with Pernicious Anemia (B12 doesn't absorb normally) and I've been getting monthly injections of B12 (husband gives them to me). Anyway my Lupus is under control. The Fibro makes me hurt all over, but it varies in intensity depending on weather, stress, and how much I've exerted myself. What really rocked my boat (so to speak)is a stroke I had in 2001 which put me out of commission and I had to go on disability. At that time I also was told that scans of my brain indicated multiple former strokes. I take lots of meds,my balance is not too great, but I still want to go full time in our 5ver. I would love to sell our house.....once...of if... the housing market gets better. I would really love to be free of everything that goes with owning a house. For now....I'm downsizing, decluttering, etc.....and dreaming.

-- Edited by nwlambear on Sunday 7th of November 2010 11:34:38 PM

cooksgone · RV-Dreams Community Member

You are all some encouraging, what a wonderful way to live your lives, my husband has had 9 knee surgeries and has trouble walking and lives with a lot of pain, but it is our dream to travel and be in warmer weather, I believe I will have to be the primary worker and don't mind at all, camphosting will be perfect, that way he can sign guests in and I can take care of camp site clean up and bathroom duties. I retire the end of June and hopefully we have a position by fall/winter. God Bless you all and keep living the dream! Most people with handicaps just give up and die!

Spirit_Moves · RV-Dreams Community Member

Hi,

I am so glad I have found this group it just confirms that my decision is the right one for me.. I didn't put in my bio but I have Chronic Fatigue(dx'82) Fibro('89) and degenerative disc disease. I have learned to manage with only tylenol these days and a muscle relaxant as I have become allergic to all drugs due to the multiple surgeries. Keeping comfortable and stress down is a +. I am going to order your book I am interested as I have done many of the things you have posted. Of course the average person always says"Oh you look so good" that is because I limit my time. Days not so good you don't see me..LOL

It has been a concern of doing fulltiming but finally I came up with answers in how to do it, thanks to this great web site and all of your input. Like all of you weather causes a direct response in my body. So I don't plan to be in real cold or real hot climate. I hope that I can meet all of you down the road one day.. We'll have alot to chat about.

Thank you again for sharing.. smile

-- Edited by Spirit_Moves on Thursday 5th of April 2012 10:24:59 PM

Bubbaswench · RV-Dreams Community Member

I too have Fibro, oa and several other osteo/rheumatoid problems and some neurological side effects. We are planning to start full timing after our youngest graduates in 2014,but we have been rving since the oldest was barely 2. Thats over 20 years, we have an awesome tow vehicle, and after this weekend we hope to have a travel trailer. We too are going to follow the weather, and I agree less is definitely more. I am 45 and have been on disability for 3 years. Aside from the everyday pain from the fibro, I have cervical and spinal stenosis and annular tears in the vertebrae between L3/4 and L 4/5. I hope you all get the chance to enjoy your full timing and that it brings you peace from the chronic pain-i live in Florida and the heat aggravates my fibro so badly I rarely go outside between June and September.

My question- has anyone had a problem with their disability since going full time? I mean does the traveling cause you an issue? I was told we have to have a permanent residence address and not a po box which is not a problem for us at this point, but who knows what the future will hold.

Stay sane, stress free and pain free,

tammy

Lucky Mike · RV-Dreams Family Member

Keep your life going!!!!!!!......

I have Diabeties.....Severe Stenosis C-3 thru C-7......Quad bypass ....a non repairable Anurism...And a bad case of HCV.....

Meds are available Quickly via Walmart , Walgreens or Fedex
My doctors are available thru Core on the East coast and I round robin myself every three months or so to the closest visit....

Everything in this lifestyle is doable and there are enough of us doing it that your help is right here getting your answers!!

Remember.....you can stay behind and wait on your pine box.....or travel and do what your heart calls you to........and finish up in a fedex package sliding to the front door with a lable that says "It's Been A hell of a Ride" open other End!!!

Rosie RV Thumper and Dog Dog · RV-Dreams Family Member

Lucky Mike wrote:
Remember.....you can stay behind and wait on your pine box.....or travel and do what your heart calls you to........and finish up in a fedex package sliding to the front door with a lable that says "It's Been A hell of a Ride" open other End!!!

Ha!

Mike I love that!

My husband has diabetes, congestive heart failure, stage III kidney failure, gout, history of an MI, stents, a triple bypass and the list goes on. He takes about 20 different medications at any given time. His balance is terrible, his feet are quite numb most of the time from the neuropathy and he has days that he just can't get out of bed. He uses home oxygen too. We are exactly 14 days from our full time date. We have an appointment today with his family doctor, one next week with his rheumatologist and one with his internest the day before we leave. I'll be giving him his injections every two weeks and we hope to determine how to get his pain meds while on the road. We are members of an HMO. Our doctors are available via email and are wonderful.

He gets long term disability through his previous employer and yes, we have worried that they will try to cut him off if they find out what we are doing. He is also on Social Security Disability but I don't worry about them cutting him off. The disability company did stop paying him 7 or 8 years back stating that he was able to work. It took us over a year and cost $35,000 of the back pay to get it back. We had to pay an attorney 1/3 of the recovery. I just left my job at the Office of the Insurance Commissioner in our State. If you run into problems with your insurance, go to your state insurance office for help. That is what they are there for and people just don't seem to know they exist. If I had known at the time, we would have had an extra $35k in our account. Fight for what is yours.

Good luck to all of you!

PIEERE · RV-Dreams Family Member

I have L-3/4 &L-4/5 bad discs since 1985 and had a heart attack the end of March, 2012 requiring 3 stents and angioplasty. Oh Yeah: have to watch out what I do. But Like Mike said: I am not going to quit living. I have been work camping since 1998 on and off and constantly since 2009. Meds are available no matter what state your in. If you need a physical address there are Mail forwarding services that will give you a legal address instead of a POB. If you want something bad enough it takes effort; but you can make it happen.

Bubbaswench · RV-Dreams Community Member

I love all the positivity on here. It makes me so glad that the hubby and I are taking our next step towards full timing. Hopefully I will be coming home with my new future home. lol.

Also, I am glad to know that ssdi does not have an issue with the traveling. I will also have to coordinate and set up for my quarterly check ups. my hmo is also nationwide, and hubby goes to the VA so we are set there. We will do some work camping, well, he will mostly, but i will do what I can.

Mike and Pierre, I like your attitudes about life, and dealing with your difficulties. I am very humbled to read how severe some people's issues are compared to my own. Makes me realize how lucky I am. I remind myself every morning I wake up in pain, that it's still a good day, because I did wake up.

I am sure I will be asking more questions and reading more advice from all of you in the future,

gjmiller138 · RV-Dreams Family Member

Lucky Mike.....I share several of your ailments, stenosis, hcv chronic stage 2, double disc fusions that failed to fuse completely, neuropathy issues through my legs and oa all over, also thyroid issues, GERD. I have blood work every 6 months for thyroid and have a pain doc for the past 6 months. Have Insurance with medicare advantage. SSDI and LTD. I worry about those monthly visits to the pain doc. As you know Tylenol is not an option with liver issues and ibuprofen out of the question with GERD. Have you or anyone else been able find doctors while on the road? I see my pain doc monthly

-- Edited by gjmiller138 on Sunday 23rd of June 2013 07:37:41 PM

Lucky Mike · RV-Dreams Family Member

I Travel within a safe distance of my providers....I find that I can jump on the train and head up for my appointment and back....or I have been lucky enough to park at the hospital which has 3 60 amp hookups in the parking lot..

pain wise I take nothing other than an aspirin a day for my heart and alot of meditation....I find that I can control my pain within reason and I hate drugs at least opiates.......

the medical network That I deal with has very quick referrals and works to get all the info and testing back to my doctors immediately....I feel extremely lucky to have this at the time

I am a DNR patient so they have been great and compassionate in working things out for me.

gjmiller138 · RV-Dreams Family Member

Thanks for the info Mike, I wish my pain was more manageable. Maybe once I get on the road where I have less stress and not a house to have to clean and worry about my pain will ease up. I guess there is a solution to every obstacle and I plan on finding those solutions. Your a good example. Best wishes to you

gjmiller138 · RV-Dreams Family Member

pierreandcolleen wrote:
My husband has FMS and he is also a physician who specializes in Chronic Pain. He stretches daily, he keeps his activities within a level that works for him, and he naps when needed. He has also written an article on FMS that some of you might find helpful.

http://pierreangier.wordpress.com/2009/08/02/expert-advice-on-fibromyalgia/

-Colleen

Hi Colleen, one of my concerns is how to have access to a pain doc on the road. Can you share that with me its one of the issues I have with traveling. Please feel free to send a private message as well. Thank You

BesaMaes · RV-Dreams Community Member

I have FMS, OA, TBI, Oh and a hole lotta other crap I try to ignore on a daily basis. LOL AND I am Still gonna buy an RV and go straight into FTing! I am still researching all of my options in keeping it simple. As far as my meds are concerned, I was told about looking into a Mail Forwarding Service? I honesty haven't had the time to look into it fully yet, but will no doubt sometime very soon, because if I no get my meds none of yous is safe out there with me on the road! LOLOL Hope it helps, HUGS

Talensnana · RV-Dreams Family Member

I also have Fibro, CFS, and a whole lot of other illnesses with initials after it. My husband and I are planning on fulltiming next year. The main reason is that I actually feel better when we are RVing. My stress levels drop and when we hit warmer climate I do much better. Kansas is way to cold for me in the winter.

I currently am waiting on disability (in the appeal process). The attorney I have said to just use one of my children's addresses as our home base if we sell our house before the process is completed. I have to visit my doctor every 3 months so we will make sure we come through this way. (Don't think I could stand being away from my grandbabies longer than that). I make sure I have atleast 3 months of meds before we leave, and my pain med which I take on my worse days, I stock pile a little of so I never get stuck with out it, and the ability to get more. My GP is very encouraging about the travel and makes sure I have enough meds before a trip.

The great thing is that if you are RVing without a deadline to be somewhere, if you are having a bad few days, you just stay put. We have had to do that a couple of times when getting out of bed was just too hard.

Lucky Mike · RV-Dreams Family Member

It only gets better out here Patti!!........I also am Medically Challenged (I hate the word Disabled)..alot of things you worry about before you come out on the road will seem minor once your out here!!

I make it a point to carry all my records on portable systems.....I try to get to my Primary care on a 3 to 6 month schedule but alot of times just sending the appropriate tests he requires thru labs and clinics on the road keeps him happy and I only have to call or Skype my visit with him.

I have used walgreens out here for meds and just recently changed over to walmart without problems!

your Right!!.......less stress out here , having the ability to just stay in bed in the morning when things are not going as planned is great!

Im hoping your SSD/ goes thru Quickly.....mine took to long and the day before the hearing they compromised and finally made Good.....I was really losing faith in the system by that point!

Enjoy this lifestyle!!.........there are lots of people out here that are " challenged" but my take is that its what makes my life so more enjoyable and gives it meaning!

Live, Breathe, Relax..............................

Mike Sr.
Nikki....(Service Dog and captain of this ship!)

Talensnana · RV-Dreams Family Member

Mike thanks for the encouragement. You sound like a trooper. Hopefully someday we will meet you in person. I love that you have a Safari Trek. Our first RV was a Safari Serengetti. We fell in love with RVing in it. I miss it. It was a great RV. Have a great day......

Patti