Hello - newly diagnosed, mixed emotions

[Elliexray]

Hello all, I was diagnosed in January this year, believed it was triggered by the death of my mother last summer. GP is great and seems well informed, was a big surprise to me. I have a loving partner and 4 children as well as working full time in a professional job.

Medication wise I started on Pregablin upon diagnosis, rapidly increased over 3 weeks due to the pain. the cold weather made it worse and was in bed for 3 days and seriously struggled, GP increased my medication to 300mg twice daily for the worst days and trying to get back down to 100mg twice daily - not being very successful so far.

Since diagnosis and starting medication I am significantly better and try to be positive, I see a physiotherapist regularly. With support from my employer I have been able to remain at work (flexible working).

really struggling this week, not just the pain - regularly waking at night as I try to move, my shoulder feel as though they are dislocating when I move them, and the burning in my arms suddenly flares up and is intolerable.

Does anyone else feel like this at times and has anyone advise on managing some of the symptoms better?

thank you

[tinyblonde]

Hello! Glad you have an informed GP, it certainly helps - and the loving family too! I spread out my medications a bit more (i.e. 200mg 3 x per day, or work down from 100mg 5/4/3x per day etc) so that it’s a bit more spread out, the same with taking different pain meds - that way (at least in my mind!) there’s always something actively working instead of just slowly releasing. I have the waking at night thing despite meds that should help with that, I like to either just get straight back to sleep or sit up, have some water or pop to the bathroom so I’ve moved around to let off the annoyance of being awoken so rudely by Fibro, and then try settle down. I also find it helps to establish a specific routine to ease into it. I hope this helps somewhat and that your GP and physio continue to help

[Cmh59]

Fibromyalgia is one of those that pain things that I feel creeps up on a person. My mother has had it for over 30 years. They couldn’t put a name to it at that time. I had a wonderful middle eastern doctor who diagnosed me just while examining me because I was so touchy. My body had so many tender points. I felt like one big giant bruise. It hurts to touch my skin to bathe. You basically feel like somebody beat the crap out of you. I take gabapentin 300 mg 3x day. At first it made me very tired. Some people take Cymbalta and that is helpful, but did nothing for my depression. I have a friend who takes Lyrica and says it is wonderful. I used to garden and run errands do a lot of socializing. I’ve lost my energy. I hope you have a strong support system as I do not. I have developed rheumatoid arthritis along with this which has taken a toll on my marriage as my spouse chooses to think I have become lazy. My mother and son along with my rheumatologist see what I go thru. I hope you can get the support you need. God Bless

[Dizzytwo Moderator]

Hello Elliexray welcome to the best group of supporters on the net It goes with out saying i am sorry you have to be here but you couldn't have come to a better place for friendship and understanding.

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[Dinkie]

Hi Elliexray and welcome to the club nobody wants to be in. It is often a shock to hear the word fibromyalgia and certainly for me I had never heard of it and the consultant just wrote it on a piece of paper handed it to me and said go research. I sat in the hospital car park and cried. I had no idea what it meant. Didn't take me long to give myself a good talking to and realise that I was still the same person I was five minutes before the word "fibromyalgia" came into my life, except that now I had a label attached to it. Fibro is different for all of us so it's a case of finding out what works for you. Please do not always assume that every pain you have is fibro related. Easier said than done I know but recently I put my constant shoulder pain down to fibro and eventually I went to the GP and after x-ray I was diagnosed with calcific tendonitis - completely unrelated to fibro.

Glad to hear you are being supported at work, it makes all the difference. I had a reasonable adjustments meeting and reduced my hours which works well for me and enables me to stay in my job.

You will learn what helps you, for me it is avoiding all processed foods, using epsom salt baths, hypnotherapy and chiropractor treatments, when I can afford them and the most important skill, which I have yet to master - learning the art of pacing yourself.

We are generally a happy, cheerful, supportive bunch on here. No question too silly to ask as you can bet someone has either asked before or is wondering the self same thing. We do of course also enjoy a bit of banter and fun too. Welcome to the gang.