New to this forum. Information Needed... - Fibromyalgia Acti...

Fibromyalgia Action UK
48,244 members59,873 posts

New to this forum. Information Needed on Fibromyaliga

Hidden
Hidden

Hi I was diagnosed in March with Fibromyaliga and I surley would like some information on it please. I am taking gabberpentin 900mg 3 times a day but I am still suffering with pain and stiffness. I really cannot cope with Fibromyaliga, it's making me feel really depressed and down. I cannot do the things I used to to and relying on my daughter to do house work etc isn't really far on her. Getting out of bed with the stiffness is a real problem. As I really need to go toilet, on many occasions I have wet myself and I feel so embarrassed for myself I just stand a cry. I feel so depressed. I exercise with my body but cannot spend a lot of time doing it because the pain. Thank you for reading x

12 Replies
oldestnewest

Hi jackie

Welcome to the friendly forum. It is normal to be a bit down having got diagnosis. We all want our 'old life' back. It is like a death in the family and the stages are similar,anger,guilt,and finally acceptance. Steps to assist you start with information. Please check our sister site fmauk.org where you can get a booklet for people living with Fibro its very informative. It sounds crazy but true stretching in bed before you exit is a way of lessening the stiffness from over night. pace yourself with gentle exercise during the day. 'Do it for 20 minutes' is key. Regarding your waterworks a GP can assess your need for urge incontinence and possibly suggest medication. A panty liner/St when you are outside could be a solution to wetness.Try doing something for someone else that can reduce depression. We do have a comedy Corner so brighten up and have a chuckle..... Laughter is the best medicine.

Gentle hugs

Hidden
Hidden in reply to skit

Thank you for your reply Skit. I will have a look on that site you gave me and do the stretching before i get of bed. Thank you again. Hugs to you x

Hidden
Hidden

Hi, sorry to hear you're struggling. It's a hard thing to accept isn't it. Maybe you should see the Dr about the gapapentin not working and your difficulty getting to the loo in time. There are other meds and self help you can try. You won't feel so low forever, you can have a life again. Take care xx

Hidden
Hidden in reply to Hidden

Thank you replying to my post. I have made appointment to see my gp on 3rd may lets hope he supply different pain relief xx

Hi and welcome to the club not one of us particulary wants to be in. Fibro is different for all of us and what works for one may not work for another so I am afraid it is very much a case of trial and error.

I remember crying at the diagnosis but soon gave myself a good talking to and said I am still the same person I was five minutes before the word fibromyalgia was mentioned. We do go through a grieving process so don't be too hard on yourself.

Stiffness and muscle pain try epsom salt baths, hot wheatbags, hot water bottles or if in the hands sometimes I treat myself to hot wax treatment. The less activity you do the more stiffness will take hold so gentle stretches or tai chi or just a stroll down the garden. I have a bed rail I can grab to help me into the upright position - may be worth a look. I also rest half sitting up as the pain is too much in the hips to lay down. I can't tolerate prescription meds so it's biofreeze gel, tens machine etc to try and keep me mobile. I walk with sticks, crutches or a rollator depending on the sort of day I am having - took ages for me to admit I needed some help to stay upright but a couple of falls soon had me admitting defeat and reaching for the sticks - as they say pride comes before a fall.

Have you tried CBT if not ask your GP about it, works for some, and perhaps a referral to the pain management clinic. Hydrotherapy is another popular therapy. Personally I need the help of a chiropractor and a hypnotherapist to keep me able to work.

The main challenge I have is the art of pacing myself - on good days I go hammer and tongs at whatever needs doing then have to spend the next days on payback! I am getting better at it but it's still work in progreess.

Good luck

Hidden
Hidden

Thank you Dinky for the information you given me. Will look to everything you have said. Xx

Sorry to hear that, get LDN don’t waste your money on other medications I have tried everything and finally I got LDN . Start 0.5 every two weeks increase 0.5 up to 4.5mg it changes your life .

Bluenordic
Bluenordic in reply to Joy2018

Hi Joy 2018, what is LDN, ? I only know it as an abbreviation for London! Thanks

Hidden
Hidden

Thank you Joy. I'm being a bit thick here but what is LDN? I don't think the Gabberpentin is helping. My stomach is swollen and feel very uncomfortable xx

ldnresearchtrust.org

Low dose of Naltrexone

Hi Jackie , Sorry to hear that you are now part of our group...I have worked with clients having fibromyalgia for about 15 years. I use to sell mobility equipment like walkers, wheelchairs and other devices. We all can get depressed in the beginning as we are in so much pain...we can choose to feel sorry for ourselves ...or , pull up our pants ...and face this head on. I know ...I have been there. I have PTSD, anxiety disorder, and osteoarthritis with degenerative disc disease. I am taking gabapentin 2-3 times a day... I am currently having injections (nerve block) to help deal with the pain. I take OxyContin when pain is severe...really depends on the weather. I find that wearing compression clothing works great. Sigvaris makes nice leggings...stockings...I also wear one piece body suits...similar to that of spanks. Arthritic gloves help with the hand pain.

My family and friends now know that if I am wearing more make up... I am having a really bad day. They have also learned that I do not want them doing everything for me. If I say I am peachy... I am hurting and need to take it easy. If I am not talking much...I am really bad and find it hard to focus on a conversation.

I get up in the morning ...gently, stretch before standing.

Take my medication...sit in my recliner for 30 minutes while having my decaf coffee. I take a really hot shower...it relaxes the stiff muscles...then I do some housework...slowly...make the bed..dishes...laundry...take breaks often. But, i get it done.

Massage helps, talk to a therapist as well...it will help with depression.

Most importantly don't be hard on .yourself...if the be doesn’t get made today...make it tomorrow...once you find a regiment with medication...your life will then become a routine. Please don’t take this in a bad way... we are all hear together. Try and find things that calm you...listen to your favourite music or do a hobby...it gets you focused on other things. Once the weather gets better... we will all feel better.

Lastly ...keep your head up. Things will fall into place.

Kindest regards,

M

You may also like...