Fatigue related to Lyme and RA?

[TheHunterKid90]

Hello all,

I’m a frequent reader but first time poster for this particular discussion board…I am a full time horse trainer with Chronic Lyme and Rheumatoid Arthritis. RA is mostly under control with immunosuppressive drugs, my Lyme titers fluctuate but I haven’t had a horrible flareup in about a year…despite most of my issues being controlled, I still struggle daily with just being absolutely exhausted…the type of exhausted where I plan my day and life around my sleep schedule…i work 6 am to 5 or 6pm 5 days a week and half of a weekend day, that changes at shows of course but my goal at the end of the day is to get to sleep in the fastest way possible. That means being asleep and snoring before 9 most every night or I cannot function the next day. Obviously I realize how much sleep i need so my job does not suffer, but my marriage and social life has. I can remember at 16, 17, 18, 19 etc routinely getting 5 hours of sleep a night and being totally cool with it, I just don’t think it’s normal to need so much rest to function like a normal human being.
its obviously frustrating, I want to be able to do things after work like movies or dinner with friends etc but I know every time I will pay dearly for it so I just don’t even bother anymore…am I missing something that’s keeping me from living a normal life?

[4LeafCloverFarm]

Wow, that’s a tough combination - Lyme & RA. I don’t know your age (and you don’t need to say), but from personal experience, each decade you get older, things like how much sleep you need, do change (with some exceptions, of course). Add to that an autoimmune disease (I have Multiple Sclerosis), and all bets are off. Each person is unique, so not every person with MS or Lupus or RA will have severe fatigue - ditto for Lyme. Also, medications can play a roll in tiredness/fatigue as well. Definitely speak with your Dr. about fatigue, if you haven’t already.

I’m in my 50’s and I have to get 10 hours of sleep or I’m useless if I have a full day planned. I often sleep 12 hours after a really long, hectic day where I do a lot of driving. Early on I tried some meds for my fatigue and (for me) they didn’t help or the side effects were worse than the treatment. But I encourage everyone to at least go over all the prescription and over-the-counter options used to treat fatigue with their Dr.

It can be hard finding a balance in life, especially if working is essential for the family budget. Hang in there and best of luck to you!

[RMJacobs]

I’ve had RA for 21 years, and find my need for sleep just keeps increasing all the time. I’m on a biologic and methotrexate, and my inflammation numbers look good, but I sleep 10-12 hours a night and still wake up tired.

When I was still working, I became more and more miserable until I just said “forget it” one day and quit at age 59. I had a high stress job with long hours and lots of middle of the night emergencies, but I went on with it for so long that I no longer feel capable of working at all. Luckily I could afford to quit without having to file for disability.

The sucky thing about all this is that I would love flexibility in when I drive my pony, but he hit a wall the same time I did and he is retired as well. With my level of disability, I just can’t take on another horse, so I just groom him, pet him, and call it good. He doesn’t mind a bit because this horse has zero work ethic, even back when he was in his teens.

Now I sleep when I want to, with the only caveat that I make sure to do my daily bike ride when it’s still relatively cool out.

OP, you have lots of sympathy from me, having lived it. I don’t know what the answer is for people who need to work, either for their financial health or mental health. I had no social life and no time with my family when I was still working. I worked and slept. That was it. It’s no kind of life. My husband bugged me for years to change my career path, but I loved what I did and anything else would have been a poor compromise. So where does that leave us? I guess it leaves us in a bad place. I wish I had an answer.

Rebecca

[TheHunterKid90]

@4LeafCloverFarm I am 26, so mentally this has been very difficult for me to adjust to being so crippled by this disease combo. My husband is pretty darn understanding of it all, he has finally been ok with going out and doing things on his own or with friends because I am just too tired or in too much pain to manage it. I did try the not working route for several months, it was shortly after my Lyme diagnosis and before we found out about the RA…i went mentally crazy, I read a million books, I couponed, my house was spotless, my dogs were pampered and spoiled, but I was so not happy, I was a miserable wretch.
I do try to eat well, I stay away from refine carbs and sugars, eat lean protein, keep my gluten to a minimum.

[4LeafCloverFarm]

I definitely get the needing to work thing, @TheHunterKid90 to keep your mind engaged and be doing something productive/meaningful (not that spoiling your puppies isn’t productive/meaningful!). You are very young to be dealing with all this, where as I was in my mid-30’s when I started getting really sick, and had a bit more mileage under my belt so-to-speak. But regardless of age, dealing with chronic conditions, especially one that results in fatigue, definitely has it’s challenges.

Have you tried a Lyme or RA support group? Now, don’t poo-poo it before you try it! It’s not a bunch of people whining about their conditions. It can be very liberating and encouraging to talk to people that have the same issues as you do. They can also share some great tips on how to manage your illness. I get that support groups aren’t for everyone, but you should give it a go if you haven’t. My husband went with me to the MS support group I went to, which helped him too.

I saw a counselor after I was first diagnosed. I grew up in a family where health issues simply weren’t discussed, as if not acknowledging them made them “cured” or go away. I’d tell my mom I really didn’t want to go to so-in-so’s family Christmas party because my balance was way off and I was really wobbly (looked quite drunk actually), and she;d say “Well, just don’t wobble”. LOL Going to the counselor really helped me with letting that kind of stuff go and accepting my limitations, without giving up hope.

Which brings me to my last suggestion. No matter what, don’t let go of hope. Go hug a pony, go join a support group, see a counselor, talk to your doctor… do whatever it takes to not let your condition, or its symptoms swallow you up. Stay really involved in your treatment and with your spouse too. But don’t give up hope.

My neurologist and other doctors thought my initial prognosis was debilitating disability, as in within 2-5 years I’d be immobile and in an old folks home - I was really that sick. But through the support group, counseling, trying several different medical treatments, hugging my horses, and really listening to my body, and not beating myself up all the time, I proved them all wrong. And laughing - lots of laughing, even at myself.

Remember, your mind is a very powerful tool in your treatment.

[SonnysMom]

I found that high doses of B-12 would help with my Lyme symptoms. One Lyme literate doctor gave me injections. In speaking to my weight loss surgeon he feels that subligual works as well as the injectable. I was on the B12 sublingual daily after my WLS and had to go to every other day since I had gotten the B12 so high.

[MissCoco]

Hi OP,
RA and Lyme are certainly a rough combination. I am 26 as well, and I have a chronic sleep disorder, so I can definitely understand what you mean about the frustration about getting 8-9 hours of sleep only to wake up exhausted, not to mention the frustration of having to come to terms with my limitations.

I think the advice to see a counselor or therapist to get some help with the mental aspect of your illnesses might be helpful. One of the most helpful things for me has been coming to terms with my limitations (easier said than done) and being compassionate to myself when there are things I have to say no to, skip the second half of, or ask for help to get started. Therapy has been important in helping me do that.

Another thing that may be helpful is to talk to your doctor about sleep specifically. You may not have any sleep disorders, but neurologists who specialize in sleep disorders also work with lots of people who have fatigue disorders, and sometimes have new perspectives on ways to improve, or different ideas for treatments than a typical GP.

Sending positive thoughts your way!