A memory of my first experience with myalgia?

[Jezippolito]

I first remember suffering this same kind of stiffness and pain when I was thirteen or fourteen and I could not turn my body or head and I remember crying inconsolably at the agony of it and having to attend school. It was never diagnosed and now I am suffering from it again and when it occurs I have to lie down for up to three hours and then if I sleep then when I awake I am still exhausted and the time it takes to recover means that most of my days are spent lying on my sofa. Today I tried doing a park run which is three miles. I used to run all the time and lost a lot of weight which is returning because of inactivity due to constant fatigue on a daily basis. The pain I felt after the run meant that when I got home I couldn't even pour me a glass of water. All I could do was to lie down. But feeling a wee bit better now. I always dread taking my family pets out for even a small walk because of sciatica and I don't know if I can keep them as I am also facing homelessness at an as yet undecided date. I was so pretty down about it all and my wife being gone and not being able to see my child caused me to think about taking my life. Only trouble is in spite of all the pain and this river of twists and turns I actually love life so I've no plans to visit the starry vault as yet and hopefully never will.

[Hidden]

Hiya Jezippolito you are really having a bad time and yes all that upset and sadness will aggravate this awful condition and you will have days of not wanting to see or speak to anyone but always know that a lot of us have been in that bad place when you think what's the point of being here and I'm both happy and relieved that you love life! When you have been on this site for a while you see how bad it can get for others you will know you don't have to stand alone!! When you're at the bottom the only way is up! Take care I can't help your situation but there's always somebody here who can give you some kind of advice! 👍😺

[Jezippolito in reply to Hidden]

Yes thank you for your concern and all of my well wishes to you too.

[Hidden]

I now get frequent bouts of costochondritis ( and know what it is) I now realise I had this as a small child, maybe 5 or 6. I described it as shoulder ache, in that the pain was along the top of my shoulder, up to my neck. I expect my parents took me to the dr once but of course nothing was found amiss. After that I was told I was imagining the pain or being attention seeking. As a teenage (15-16) I had quite a physical job so should have been physically fit, yet I had difficulty walking up a long hill to work, had to stop frequently. When I had my first child ( 18) the midwives said they were shocked at my poor muscle tone—- it felt like a criticism and I remember feeling mortified that they thought I was a failure. Put me off hospitals and hospital staff for life !

I mentioned to the physio the other week that if I burnt myself on an iron or cooker it went on burning for hours, no matter how much cold water and ice I used. I thought everyone had that and it was only a few years ago I found that most people can ignore the burn after an hour tops. I’ve still been using ice 8 hours after.

[Jezippolito in reply to Hidden]

Are you also sensitive to loud sounds or sudden loud sounds...

[Hidden in reply to Jezippolito]

Sorry, HUGE apologies I misread your post this morning ( talk about brain fog!) and thought you were asking about first signs of fibro. Sorry you’ve experienced so many problems and I hope life improves for you soon.

Re noises, Yes, dreadful. I’ve never been able to stand repetitive sounds and for the last couple of years I’ve stopped going to the cinema and theatre as I have no control over the volume. Cannot bear people speaking loudly and I’ve one friend who is terribly loud. I now go down the road of only meeting up with her every third time she suggests is as she hurts my ears. I’ve explained but..... you know the rest !

[YASMINTINA FMA UK Volunteer]

healthunlocked.com/fibromya..., morning , glad you finished with a positive that's half the battle thinking that way that life and what it sends our way and sometimes on a daily basis with fibro, I hope some accomadation will get sorted for you. Yes I’ve had to give up my swimming really miss that but made fatigue worse, shame but try having small walks some days. I really hope the situation can be resolved to see your son, children make us feel positive and watching them grow up is rewarding. Perhaps try a brisk work another day running sounds like it took too much out of you. Rest up and have a warm bath if you have one. I’ve posted a link above if you would like to lock your posts as only our community can see and members tend to respond more if a post is locked for privacy reasons .

[Jezippolito]

My landlord is a lazy man and does nothing for the house in which I live which is now in the possession of Cairn who are just as bad. I have only shower water and not hot water for dishes or bath so I have withheld my rent for two months and no one has said anything. I really hate doing that but they do nothing and have only got back to me to arrange viewings which I have avoided as I dread them and my privacy being compromised. Thank you for your concern about me. As I have been for one hour out today I had to walk very slowly and the frustration I feel about only being able to jog and not run for short distances we runners call fartlekking has been even too much for me. I know that when I do it I am always going to be exhausted when I get home in spite of something I have always been able to do with ease. This last year however has taken a turn for the worse and I have only just recovered today after getting home and lying down and managing to sleep for two hours awaking and still feeling knackered and sore in my neck and arms almost like a fever but not a fever. I really should be thankful though because others whom I know with M.E. and myalgia can't do this at all. I dread the day I can't walk even short distances anymore without this constant feeling of being drained. I have not been diagnosed and I dread going to the doctor and hospital as I have always been a very active person who could run three miles in 20 mns and two point two in 15 mns flat. However now I can't even walk to the supermarket without feeling as if I don't want to. Another problem with this is that when I lift a cup of say coffee my hands shake uncontrollably and I don't know if that is related or not. Anyway in the meantime thanks and all the best to you and yours...