Lack of energy in fibromyalgia/M.E.

[KarenWW]

Hello. I was diagnosed with fibromyalgia in Sept 2015. My joint pain is mostly kept in check with amitriptyline. However since initially being put on citalopram and reacting badly to it, I now get patchy head pains and sensitive areas at the back of my neck which sends pain to the top of my head whenever I am getting tired or running out of energy, or sometimes for no apparent reason at all. In January I had a bad episode after I had pushed myself too hard, resulting in a&e admittance to be checked for chest pains and a long wait seated or walking through corridors, whilst shaking badly and feeling like I had no energy left but just kept pushing myself to do what the medical people told me to. This resulted in a week in bed barely able to move. Lifting a finger or shuffling a leg in bed gave me the violent shakes. Also extremely dry mouth, bad muscle twitching and at times struggling to form words, even though could think clearly. Eventually after 5 days my GP on home visit decided I prob had upper water infection and prescribed course of antibiotics. I then picked up rapidly. However since then , especially these last couple of weeks I seem to be easily getting v.tired which rapidly leads to head pains and a few times the chest pains and shaking. When I am at my worst I start to lose the ability to form my words again. the muscle twitching starts to return, I feel cold and shake, and energy levels feel like they are below zero and I am pushing myself beyond. The head pains also increase. However, like today when I didnt feel great in the morning (fatigue, cold, shakes, head pains) but had to make myself get up to cook the family dinner, I found lucozade gives me a kick start when all else fails. It helps me get through the activity and even picks me up after, or so it seems. Does this make any sense or is it just my imagination? I cant work out either if the felt decreasing energy levels since January are in my imagination and I just want attention, or I am getting worse. This isnt fibrofog (it feels like my brain still works at top speed) but like zero energy and pushing myself to less and then the body reacts to it. This sounds worse than the fibromyalgia fatigue I have read about, and twice ME has been mentioned to me, once as a passing comment by my GP in January. Can anyone help?

[Joanna1973]

Hi I've had fibromyalgia for 15 years and all the symptoms you describe are true to fibromyalgia .it's hard when your brain knows the words but you just cant get them out.not being able to swallow and so on . I have recently been to a pain clinic and was told that all my symptoms are fibromyalgia. This is an on going good battle with this condition and you are not going mad this is all the illness .I sympathise with you the shakes are awfull and not being able to swallow is painfully at times , you can get a spray from the doctor that creates moisture in the mouth . You can also get Medication to help with the twitches I send all my love you not alone honey this dam illness affects so many people in many different ways .if you find your not getting help from your doctor change doctor or ask to be referred to a pain clinic they don't have all the answers but are now doing their best to help people cope and manage to live better xx

[KarenWW in reply to Joanna1973]

Thanks for replying. I will prob go to see my GP next week, when she's next in, after the bad run I've had this week. I will ask about the spray. She's pretty good: did her first training in rheumatology and suggested fibromyalgia long before I raised it. I'm due to go on a pain management course in mid April: it was delayed due to incorrect admin in the dept!

[Hidden]

Hi there, Carol from Stockport, I,ve had fibro/ME now 14 years, YES you do get absolutely knackered some days, you could do with a good physio to help you and an occupational therapist, they will teach you good practice on "pacing yourself" your family will have to help more to avoid more hospitalisation.. I took early retirement in oct 2015 and I feel so much better for it.. It is hard to get \PIP but if you see a welfare rights officer they will give you good inout how to apply.. Don,t always stick the Fibro label on everything you experience you can be wrong!

[KarenWW in reply to Hidden]

Thanks for your reply. You wouldnt believe this but this is 4th time have tried to reply. Each time in middle, get distracted and then my tablet goes into screen saver and the reply vanishes never to reemerge!

Anyway, before I lose it again, and the reply gets shorter each time to try to finish! Im expert at PIP as have three out of 4 autistic sons, two been on DLA since diagnosis at 3. They now 18 and 16 and have been transferred to PIP. I frequently help others fill out the forms. Up to recently was convinced I wasnt bad enough as Amitriptyline kept most of joint pain in check. However my fibro seems to accumulate: anything that hurts my body, whether an accident or tiredness from something badly affecting me, then effects dont clear up but continue: hence since my bad episode in January I now have frequent episodes of tiredness and all that it brings. If it continues to worsen may consider it. Ironic as I get carers allowance for my sons, although that is more supervision needs etc.

Actually I'm prob prime candidate for succumbing to fibro after 18 years sleep deprivation due to them. When youngest son born (the non-autistic one) I was getting up to 3 older ones at night as well as breast feeding baby. When realised couldnt do it the 2 older ones were left to own devices at 11 and 9. But only last Feb eventually managed to train 3rd son to stay in bed until 6am, by which point the hot flushes had kicked in big time to keep disturbing me instead!

This is also reason why it is harder to get sons to help. They are good at vacuuming but when it comes to the kitchen everything takes a lot of patience and time and rehearsal to teach them anything. Their autism doesnt show much when they are out now, but when it comes to something like this all the obvious just passes them by and everything has to be painfully and carefully taught: and I need to give more time and energy to that so it benefits in long term. My husband is brill but works. However his job, a church minister, allows him to be fairly flexible in the week around family needs. Also the church has been brill when I was bad in January: the elders brought in a stand-in preacher to ease prep time for my husband, and many folk brought meals around for our big family. I really thank the Lord for the way they helped, and there have been offers of help since: I just have to learn to eat my own pride and admit when not coping.

Hurrah I think I will send this before it vanishes!

[Natreem36]

i had bad reaction to citalapam too back in december im petrified to try any other antidepressants now. i also suffer with headaches same as you joint pain fatigue i found the last 12 moths have been worse especially the last 5 months am hoping this is just a bad phase and i will perk up always cold pins and needles drained all time insommia so may symtoms

[KarenWW in reply to Natreem36]

After a bad reaction to citalopram i was put on amitriptyline. I'm now on 20mg dose and have found most aches and pains from previous joint pains now virtually disappeared. Sleep much better and solidly too. I think the remainder head and neck pains are left from the initial reaction to citalopram, not being on amitript. They are better than how bad i got with citalprm, also didnt get worse after a week's gap between the 2 meds on changeover: so i don't think its the amitript. So it might be worth you risking it or maybe discussing with gp.

[Natreem36 in reply to KarenWW]

I was put on amitriptline a while back for bad headaches i stopped taking them around december and they have come back but not as severe i only got diagnosed a week ago with fibro so have to go back to gp to discuss pain and treatment thinking about it now tho since speaking with you my pains and symptoms have worsend since not taking the amitriptiline penny just dropped....

[Eileen72]

I found amitripline the only drug that helped with pain but had to stop it as it gave me terrible night terrors.