Cheryl, I don't think my therapist gets it either. I don't think she can comprehend how debilitating fatigue can be and how painful my feet get. So, glad we have people in this forum who understand !
Cheryl (CLR) said:
Thank you for starting this thread Frances. I have been feeling like such a "party pooper" this winter. And when I look back at times that I tried to push through the pain (usually feet) and then the fatigue, I always felt like a whiner. This forum is the only place I do not feel those feelings. Even in therapy I feel like her eyes almost glaze over bc she doesn't really get it, bc she can't. (Although I don't selfishly wish she could 'get it'). A friend recently suggested going on a cruise. My first thought was, "I'm not sure I could, or would want to keep up with her". I was just thinking today, watching those people hike off in to the wilderness where an avalanche could likely occur, I used to love hiking by myself in remote places. (Sedona, Grand Canyon, The Pictured Rocks, the "back 40")
Well anyways, I would have to adjust my "hikes" these days.
No, Frances, how can she get it if she has never had crushing fatigue, depression, brain fog and sore feet all at the same time? You’ve got us for that!
In my pre-diagnosis days, I’d tell my doc that I was so very tired, depressed and achy. Her formula was to lose some weight and exercise more. sigh I used to go home a weep.
I read some where that they are going to start using "fatigue" as symptom to use to diagnose auto-immune arthritis. It will probably take many, many, years to implement this.
Seenie said:
No, Frances, how can she get it if she has never had crushing fatigue, depression, brain fog and sore feet all at the same time? You've got us for that!
In my pre-diagnosis days, I'd tell my doc that I was so very tired, depressed and achy. Her formula was to lose some weight and exercise more. *sigh* I used to go home a weep.
Some of you may remember I went on holiday in October to Tenerife. The travelling and airports weren’t easy, but I did basically nothing all day as my friend liked nothing better than to lay in the sun by the pool so I had plenty of rest. I did worry over going away and had made sure I went with some one who just wanted to relax, although we went out every evening but I coped because Id rested all day.
I do feel for you Francis, but just think of this as a learning experience if you can, Id not been on a proper holiday for years (do have weekends away with Rob but those are also for me to do nothing but relax while he works) Do you have any friends who are in the same boat as you? and may not want a busy holiday either?
Thanks Louise. I am using this last vacation as a learning experience and there are things I will do differently on my next vacation to make it more enjoyable.
Louise Hoy said:
Some of you may remember I went on holiday in October to Tenerife. The travelling and airports weren't easy, but I did basically nothing all day as my friend liked nothing better than to lay in the sun by the pool so I had plenty of rest. I did worry over going away and had made sure I went with some one who just wanted to relax, although we went out every evening but I coped because Id rested all day. I do feel for you Francis, but just think of this as a learning experience if you can, Id not been on a proper holiday for years (do have weekends away with Rob but those are also for me to do nothing but relax while he works) Do you have any friends who are in the same boat as you? and may not want a busy holiday either?
I am sorry your vacation was difficult. I can certainly empathize. My first post diagnosis vacation didn't go so well. I drove to visit friends and was over ambitious and crashed in a similar fashion. It is easy enough to do. Driving back I had to make frequent stops, symptoms flared. I distinctly remember sitting parked in my truck with my hat pulled down over my face because I had reach that point where I too was in tears. It was a hard trip. And I was very down afterwards. I have yet to attempt a trip of that nature again. But I have been doing shorter trips and figuring things out as I go. The last trip my friends and I rented suites, had groceries delivered and dined in some of the time. We had some low energy days where we watched movies, ate pop corn and snacks and just caught up. We only planned group activities for half of the time. And when I had to crash, the others hit the pool or went off on their own.
I am sorry that fatigue continues to be such an issue. I had a bad experience with one anti-depressant medication that in combination with everything else had me sleeping a lot. I had to change anti-depressants and it was like night and day. Perhaps your current medication may be exacerbating your fatigue. I am just suggesting that maybe a different medication may have more of an energizing effect.
I too have had some frustration in speaking to doctors about the fatigue. One said that my fatigue made no medical sense ... I had to bite my tongue.
Another thing to consider is talking to your doctors about directly treating the fatigue. A rehab doctor was telling me that it is an option to take medication to help alleviate the fatigue. Specifically he had mentioned ritalin for fatigue. My problem seems to have been the antidepressant I was on. But you have spoken of your fatigue many times. Perhaps it is worth exploring this with your doctor. I know that fatigue in MS is treated, as well as, some other conditions. Given how serious an issue it is for you, maybe it is time that they go at it directly.
It might make the next vacation more enjoyable and get you on a better footing overall.
I certainly wish you well. And you get big points in my book for getting out there and trying. We both need to just keep trying. We are bound to get better at this. Here's hoping for better vacations for all of us ;)
I also wonder if the Cymbalta is contributing to my fatigue, but I'm taking such a low dose 20 mg?? I really like your idea about ritalin but know if a doc will prescribe it for my condition??
For as much as a problem as the fatigue has been for you, it seems worth asking if your doctor can treat that directly. I do not have any experience with Ritalin but did get as far as googling it. My understanding is that it is a low dose, just enough to combat the fatigue. The following article from arthritis today discusses the various possible fatigue causes. It states that for unrelenting fatigue, activating medications may be required. I am assuming your doctor has already checked all the items listed in this article. Perhaps you could bring the article and reiterate how unrelenting an issue it is. I know it sometimes takes multiple discussion before my doctor we moved to the next step.