uggycat2 years ago

Hi bh i wish i could be of help i think you have come to the right place, l do know that pregabin can be very sedating if this of any help. Thinking of you uggy

bh2021 in reply to uggycat2 years ago

Hi Uggycat

Thank you for your comment. Yes I feel the effects of the sedation.

I need to know what else I can do to help myself to manage a whole day.

Regards

Bh

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LisaSnowFMA UK Volunteer2 years ago

What specific symptoms are you struggling with? Having no energy? Unable to sleep? Weakness of certain muscles or body part? Since symptoms vary greatly among individuals, if you can be more specific it would help to get more specific/useful suggestions.

LisaSnowFMA UK Volunteer2 years ago

Of the symptoms you said you had "headaches, chest pains, pains generally all over the body, tinnitus and IBS. ...sleep apnoea and acid reflux. " the pain and disturbed sleep are the most common symptoms in fibromyalgia. The others either are non specific or has a different etiology (although many fibro patients have multiple medical diagnoses). I hope you are given medications for headache and acid reflux and being seen by sleep specialist for sleep apnea because treatments for those are generally pretty effective. Chest pain can come from many health issues including more serious medical diagnoses so it should be looked at carefully. IBS symptoms can be worsen by psychological stress so take good care of your mental health, de-stress often and keep up with gentle physical activity daily no matter how busy you are. The side effects from increased pregablin will decrease /go away after your body "adapts" to it so be patient. I hope pregablin helps you with the pain soon.

bh2021 in reply to LisaSnow2 years ago

Hi LisaSnow

Thank you for your message.

The stress, anxiety and depression is the most important symptom that needs managing. I guess thats the tough ones. Lack of energy and concentration is I guess my other symptoms I need to address. Following that I guess the pains. Since the increase in Pregrablin my IBS seems to have improved.

I have been using a CPAP machine for over 4 years now to manage my Sleep Aponea. However due to the Fibro and meds I still always feel sleepy, tired, exhausted and weak. I first thought it was the Sleep Aponea, but that has been ruled out. It is the Fibro.

I manage my acid refukx with tablets. Its the same med that Ive been on for over 25 years.

The chest pain seems to be from anxiety (Ive been told). At first I thought it was my heart, but cardiac was ruled out. My GP said the Pregrablin will help the chest pain.

I am really struggling with time at the moment. Therefore going to the gym is virtually impossible. Im working daily, visting my sick daughter daily, managing 2 other young children too. My 'me time' comes about 11pm. By then im absolutely shattered.

I am hoping Pregrablin works. Nothing else seemed to have worked. Im worried about coming off Pregrablin when I need too.

Regards

BH

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LisaSnowFMA UK Volunteer in reply to bh20212 years ago

Sorry to hear about all the inescapable responsibilities you are taking on. Even for a healthy woman, with a sick child and 2 more to care for, increasing anxiety and depression are unavoidable. Hugs!

Good news is that you sound to be having a good intuitive handling on your physical and mental health and are coping with them the best you can. Your doctor sounds sharp too, has ruled out potentially dangerous alternative explanation early on, and started you on effective interventions. You are in good hands.

If I were you, at your next appointment I would explain to your doctor that your psychological health (describe specific symptoms) has worsen significantly (provide details and timeline of change) resulting in your inability to function and cope as you had before. Stress that these symptoms are getting worse. Then, ask for recommendations on what medications you could take to support you through this unusually stressful time.

I trust you will then receive the help you need to begin feeling better, regain energy and motivation, and then the most important thing is to find time to care for yourself so everything that's stressful become manageable stress and solvable problems.

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LisaSnowFMA UK Volunteer in reply to bh20212 years ago

Oh and please ****never**** feel guilty about "me time". In fact that should be your priority when pressure is high. Think of it as the "neccesary investment" to ensure that you keep up with the superb abilities to care for your loved ones.

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Cheekyisme2 years ago

Your life sounds very much like my life. I’m not going to compare my symptoms as that won’t help you any. But the 1 thing that I’ve tried that I never ever thought would help was gentle yoga. I was in a class with elderly people but I didn’t care. It helped with my muscle pain and taught me to relax. The breathing exercises really helped with my anxiety my sleep improved not much but enough. Just 1 hour a week to gently move and unwind actually done me the world of good. Because of Covid my classes ended. Now I’m back to square one. And it’s not the same doing it at home. There are people out there who totally understand where your coming from. It’s not easy to stay strong when you feel like this. But we are all here for you 😍😍xx

bh2021 in reply to Cheekyisme2 years ago

Hi Cheekyisme

Thank you for your message.

Yoga does sound good. I have told to try Pilates too. Because of COVID I havent looked to see if classes have reopened. Someone told me to tray Pilates or Yoga online. Again its findign the time for something like this. Feel guilt having any 'me time' when they are other important/priorty things to do.

Im sure theyre are people out there that understand, but Im struggling to find them. Becuase its not a visual illness, people tend to ignore you and think youre a 'wuss' or weak and soft.

Regards

BH

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Irish-Cow2 years ago

Swimming relaxes both me and my muscles.. I have so much more pain free movement in the warm water. My local swimming pool was shut all year but thankfully has opened again. It was heaven to be back in the water this week!

bh2021 in reply to Irish-Cow2 years ago

Hi Irish-Cow

Thank you for your message. Unfortunately I cannot swim well. However I can imagine it can really help with the pain. My eye sight without my glasses is very poor and googles dont work for me. Then Im afraid of heights as well as vertigo.

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