Endometriosis UK
33,983 members30,420 posts

A lonely life fybromyalgia

Iv always been physically fit and in 2013 i had a baby less than a yr later my problems started id wake with back ache it never went away from morning till bedtime my joints became stiff my legs arms and hands swollen fingers were weak and painful. two years later and my condition has deteriorated my back now locks up just sitting down for a few minutes just bending down to put washing in machine is so painful about 6 months ago my neck became so stiff and the slightest movement it would click iv also had sciatica the most dreadful headaches every day which lasted for over 2 months more recently iv been experiencing leg cramps in my calfs through out the day they have eased of and now my feet lower legs are so swollen it hurts to walk.

In november 2015 i had mri scans and an appointment with the rheumatologist in febuary 2016 he told me that my blood was better than his and they found nothing except a small amount of inflammation and that everything was normal i saw him for less than 5 minuets i cried when i left i really thought i would find out what was wrong with me incidentally my vitamin d was so low i was given fultium 3200 a day.

about 2 months later i went to physiotherapy the lady i saw was lovely i told her what had been happening to me and she understood she didn't look at me strange or question what i told her she up and told me she was going to check my mri scans she came back a few minutes later and told me that i had 3 worn disks and 2 popping out she also told me i was suffering with fybromyalgia i was so relieved when she told me about the disks in my back i knew the pain i was in and she confirmed my pain was real

I no longer trust the rheumatologist i had my pip assessment a few days after seeing him and was grateful to get standard on care and mobility i couldn't use his letter as it basically said there was nothing wrong with me i am upset about this as i wasn't able to make my assessor fully a wear of my condition.

A couple of months ago i started getting awful cramps in the calfs of my legs anytime of day through out the day and my dr s appointment left me feeling really down as i was told it was most unusual for this to happen she sent me to have blood test my little girl was poorly so i never bothered and they hadn't been so bad. about 3 weeks ago my feet and lower legs have become swollen and painful to walk on and this time another dr listen to me and i will be getting my blood testet this week he told me to come back and see him in a month which is a 1st.

I get terribly depressed I'm nothing like the person i was before this all started i was a size 8/10 now I'm a size 14/16 i feel so alone I'm 46 and a single mother to a beautiful little 3 yr old girl who gives me the strength to carry on and also feel terribly guilty as i can't play and do simple things like taking her out on her bike

2 Replies

Im so sad to hear about your sadness and pain . Its so hard. I am very blessed to have a 6 year old son who is the light of my life and as you say keeps you strong. Keep posting there is a lovely community of support on here for you. Healing hugs x x

1 like

I feel for you! I also have a pain all the time, and will have a hysterectomy in August after many, many operations and hospital visits. It is sad that life did not turn out as we planned but we still need to keep strong because of our children. They give us strength. I can not do much physical activities with my 6 years old daughter, but she has a dad who does it. Maybe you have some friend, relative who can spend some active outdoor time with her? Or do a outing to park with another parent and kids can enjoy running after each other? Just a thought... You can compensate with calm inside activities for her.

Keep strong! I wish you all the best.


You may also like...