Hello All,
I may have asked this before but....
I have had B for years and been through varying phases with it. Currently no infection for 3 months..a miracle.
In the last 4/5 years of the condition I have experienced varying degrees of fatigue when infections take hold. The episodes go from debilitating where I have little or no energy, constant nausea and any kind of physical activity brings on a consequence to low level fatigue whereby you know its there but can generally get on.
I have dealt with my consultant across a couple of years who has essentially given up and was about to press the long term antibiotics button. I have a referral for The Royal Brompton in London. The appointments take about 4 months and I suspect that I may be well by the time it arrives.
My question is to all of you.
If you experience fatigue to whatever degree
a) is it recognised by medics as a apart of your condition? Or ignored
b) has anyone one been offered any treatment /advice on mamagement or been referred to a specialist?
Last year with constant infections and fatigue I became realy mentally low with it all - a round of counselling helped but I would like to know about your specific experiences with this issue. I definitly notice the fatigue in correlation to my B health.
Thank you in advance to anyone that is able to reply.
Johnboy
Tema recurrente - por ejemplo, ver un tema relativamente reciente https://patient.info/forums/discuss/fatigue--600464.
Busca en las preguntas sobre bronquiectasia - recuerdo que hubo otra discusión sobre esto a la que contribuí hace quizás 3 a 6 meses.
Al leer el foro durante un par de años, esto es una parte regular de la bronquiectasia para muchos (¿la mayoría?) de los afectados. Nunca he visto tratamientos o drogas mágicas, pero muchas personas tienen sus propias formas de hacer frente. Mi fatiga es infrecuente y no dura mucho, por lo que yo mismo puede que no sea de ayuda, pero encuentro que lo siguiente me ayuda:
* hacer ejercicios de respiración profunda para forzar más oxígeno en los pulmones - para mí detiene la mayoría de las fatigas superficiales (es decir, más que cansancios) en seco, pero no siempre rescatará una profundamente arraigada si no he actuado con la respiración en las primeras etapas
* levantarme y salir a caminar o hacer ejercicio - requiere mucha fuerza de voluntad, pero lo peor que puedo hacer es quedarme sentado y pensar en lo mal que me siento.
Tengo la suerte de que mis fatigas nunca duran mucho (promediando típicamente media hora y nunca más de un par de horas), por lo que mis sugerencias pueden que no funcionen para ti.
¡Mucha suerte Steve1951!
Hi Johnboy...Sorry to hear about your health concerns. I have had BX all my life and have always experienced intense tiredness when an infection occured. However when infection cleared up, I was pretty much back to normal. "Normal" for me however, was never the same as for other members of my family who did not have chest problems. I would not say that I was greatly inconvenienced in the past but within this last year (age65), I have noticed a lot more fatigue. I find late nights almost intolerable and even find conversation with those other than family, very tiring. Anxiety and depression are recognised as common features of this disease and I have periods of these from time to time. I have no doubt that fretting about constant infections/medications and long term prognosis are all contributing factors. In addition, I worry about how my condition affects other family members. Healthy people have such a wonderful appetite for life and I worry that my daily routine of Nebulising and huff coughing etc might have a negative effect on their lives. For the last 4/5 months I have taken a one and half hour siesta every day. In addition I feel the need to go to bed around 10.00pm at the latest. Don't know if this helps at all. But you are not alone, Johnboy. Good luck and stay well!!
John Boy, I think fatigue is just like you say, related to the amount of infection.I mostly rest to get past the infection along with antibiotics if needed.
There are some meds for chronuc fatigue that I have thought about trying but I know that the fatigue is there because I need to rest to let my body heal. I have been making trips to test out my abilty to keep well and did well for two trips and then began to get sick again. But at least I know better how pace myself I think.
Ive been on Azithromycin for about 12 months and have only two exacerbations where as I was sick about every six weeks before. I am looking to the Infectious Disease doctors at one of our big pulmonary hospitals here in The States to see if I am using the AZ tinthe best manner possible.
Hope this helps on the fatigue part of it. It is depressing for sure but I remind myself that I still have life and that is really something to have even if I am chronically ill.
Meditation helps me also along if my meds and my church group and all my friends.
Best of luck
Keep me posted on how you are doing.
Russ
Thanks for taking the time Russell.
I feel that I need to accept the reality that the two (fatigue and Bx) can go hand in hand for some but also that I would like the doctors to be able to acknowledge that more and offer support if there is any.
Your positive attitude will go along way - I do find it hard to be positive after a long long spell of infections and fatigue - I notice myself slipping 'down'.
Good luck
John
Thank you for your very honest reply. I recognise elements of all that you say. I am also conscious of how the fatigue, cycle of infections etc affect my mood and the impact that being unwell in this way has upon relationships. I was given a period of counselling this year which I did find helpful in reflecting on how I was behaving and why. It's an important aspect of the illness that we should be made aware of.
Have you had detailed conversations with medics about this aspect at all?
My conversations led me to have a hope that the 'fatigue' part might have a 'curable' cause though I am beginning to realise that this may not be the case. What I was never told was that fatigue happens as a direct consequence of the BX and why.
Have you been offered any advice on the management of the fatigue?
Thank you again for taking the time to reply - I do appreciate it.
Johnboy
Thank you Steve - for your reply and the practical advice.
I think you are very right about finding the will power to get up and do something - it's really about a balance. When I feel less fatigued I want to do more because that makes me feel normal however I have to be careful or the result of the activity will be a a debilitating dose of fatigue.
I feel that I actually don't want to accept that this is a potentially permanent condition. I find it hard to admit what's going on or to ask for help. I think that potentially touching base with a counsellor or independent person to reflect on how you are feeling may be really useful.
Good luck and stay well.
Johnboy
Hi johnboy, I'm afraid the answer to your questions is no. In relation to "fatigue", medics just seem to smile knowingly. As far as I am concerned, they have given me no advice or help. I just poddle on taking as many naps as I feel I need. It is very anti social going to bed at 10.00pm every night.......but at that stage I am just too tired to do anything else. Sorry I couldn't be of more help. Good luck!
Hola Johnboy1954,
Espero que te sientas mejor. Entiendo por lo que estás pasando. Yo pasé por esto durante 5 años, desde un ataque bronquial completo a los 8 meses donde no podía hacer nada hasta la fatiga constante y el cansancio. Cada vez que tenía un ataque. En los últimos años, empeoró, donde tuve que estar constantemente con esteroides y antibióticos, y este año tuve 2 opciones: cirugía o 6 meses de antibióticos rotativos. Lo que sientes es normal. Es posible que tengas mucha energía por un tiempo y luego vuelvas a la casilla de salida donde no tienes energía. Yo solía tomar vitamina C de emergencia para darme un impulso en mi nivel de energía, me ayudó. Puedes probar eso para ver si te ayuda. ¡Mucha suerte con tu consulta.
Eram
Thank you for taking the time to reply.
I am beginning to understand more that Fatigue is a part of the condition.
It's hard to mentally adjust too the fact.
I will keep on searching for strategies to support the condition.
I'll try the ~Vit C.
Take care
Johnny
Hi Johnboy all the best with RB I was a patient there... Inpatient on 2 occasions.
Like you I have extreme tiredness that I put down to BX and also medication. I also have to cope with a tracheotomy. That's life!
I went for over 4 years of being in hospital with BX nearly ever other month. But with new medication have managed to stay away for over a year. The important thing is to keep up with your nebulisers and chest clearance.
All the best.
Hello. Thank you for taking the time to reply.
What meds do you have now? Good to hear you are relatively well at the moment.
I went to my RB appt. I have been clear for a while so the consultant didn't have a lot to go on. The interesting bit was that he wasn't convinced that the fatigue, which I now have at some level all the time, is a result of the BX. Said he thought fatigue would happen when you have an infection but not when not? Took blood. Another appt in December. We'll see.
Stay well. Johnboy
a) ¿Esto es reconocido por los médicos? Lamentablemente, casi todo lo que pueden sugerir es descansar...
b) No he sido derivado, de nuevo solo me aconsejan descansar.
Hace unos años cambié mi trabajo de manera significativa en un intento por encontrar una solución. Pero después de 3 o 4 años, he decidido dejar el empleo remunerado. Afortunadamente, podemos permitírnoslo. No sé en serio qué habríamos hecho si yo hubiera sido diez años más joven.