Stopping by to say 'Hi' and to meet others

Hello all,

I am new to this site. Thought that I would take up the advice of my doctors to find some support groups, and to be honest, it is very hard sometimes because family and friends don't really know how I am actually feeling nor do they know about the pain. The look of dissapointment in their eyes when I cannot do this or that or I refuse to go somewhere be used I know I cannot walk for 5 minutes straight.

I am normally a bouncy bubbly all laughing and joking type, but after I was attacked by a patient at work about 5 years ago, I have been on a gradual decline, which resulted in me being off work sick for the last year. I have been treated well by my work but I am now coming into the time where they do no longer pay me so will soon have no income at all.

I have been diagnosed with Fibromyalgia and Osteoarthritis in my joints, TMJ Jaw problems, swelling ear canals which wipes out hearing every other month, severe carpal tunnel to both hands, difficulty sleeping, extreme pain to knees joints and lower to mid back (which is the main reason I do not do hardly anything or go anywhere now), static nerve pain, regular migraines, burning skin, zero levels of vitamin D and every now and then my hands and feet swell up too. I feel very very depressed lately and have some very dark thoughts sometimes and often find myself sobbing when no one can see me. I turn to food, who does not help me as I am very obese too. My husband is normally quite good, but even he gets fed up when he goes work and after a 12 hour shift, comes home to find me still in bed due to immense fatigue. Some wife I am Hey! I know I am sounding really sorry for myself and pathetic but I feel I am drowning with no future anymore. So many little things I took for granted before, I would give anything to be able to go for a nice walk.

I would love to ask others how you cope when things are so painful and all consuming..how do you escape..if I take all my medications it only scratches the surface of the pain but then I am too drowsy to do anything, or if I don't take then to be more alert, then I am in too much pain.

I hope there are some kind souls on here that can share their insight or knowledge...and I am just starting to read some of the nice posts on here too, so many in the same boat.

Hope to hear from you soon, sorry for ranting....bless your hearts xxxx

14 Replies

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  • hi Amandoak1,

    you'll find lots of support here..the admin are great and the other members are always ready to listen...and share their experience...it's reassuring to know others are going through similar problems...knowing your not alone makes things a little less daunting. It won't take you long to feel at home here. I think maybe you should start telling your family about how much pain your in and about the fatigue...how it all makes you feel give them a chance to understand and offer you the emotional support you need...I am lucky my sister did her own research on fibro...

    don't worry about ranting...its good for the soul

    Alison 😊 xx

  • you are entitled to rant hun, apology not required...the darkness will pass honestly.

    My Rheumatologist recommended Duloxetine and its been fab for increasing energy levels and reducing pain, however due to constipation I asked to come off it...I am now on 1 a day (30mg) but struggling again so will see new doc tomorrow. I also take Pregabalin, I have piled weight on about 3 stone altogether which Im now trying to lose by healthy eating...for the sake of my joints.

    If you're struggling too much go back to your GP, and bear in mind The Samaritans or Mind for further support...just keep reaching out. This is a fab site!!

    With regards to income you may be eligible for PIP, I get ESA which is just over Β£110..not brilliant I know...but if you reduce your expenditure you will cope. Just PM for more support.

    PS do you work in Learning Disabilities? Ive been hit by pts too..although this has not caused my condition

  • hi,

    Thanks for the advice.

    I work on an organic dementia ward. very heavy work with loads of running about. Aggressive patients and lots of heavy work. Absolutely no way I could do it now. :-(

  • Amandaok1, sounds like you are in a "flare", Those are hard. Are you in UK or USA? I am in USA, Oklahoma. Weather effects me. Barometric pressure changes send me to bed. I find it very critical to stay on top of my pain meds. I take Hydrocodone (10-325) every 4 hours that I am awake. If I go past the 4 hours, I will start getting really stiff with pain. So, when I wake up and take morning pills which include cymbalta and a Hydrocodone. I have an I-phone so I set alarms for the rest of my day ( every 4 hours). Rest and do whatever it takes to relieve the pain . I use Salonpas Pain Patches ( otc at drugstore) for trigger points. Sometimes, I have 10-15 of the small ones on, to get relief. I also use a pain lotion called " TWO OLD GOATS".. if you google it , you can buy online. You should be able to get financial help. If USA, Social Security Disability, not sure what it is in U.K. but I know lots of posters on here are familiar with all kinds of resources available to you . The hardest part is accepting the "new you" and missing the "old you!!! Google Fibromyalgia for articles that will help family & friends better understand what you deal with daily. If you have a printer, print them out. Important for your husband to understand all the pain, fatigue, Fibromyalgia Fog , etc. Finding the right combo of meds is critical to living your life just a little differently. Try to push thru the Fatigue and pain as much as you can . I find if I can do small things , set up coffee pot, load or empty dishwasher, do 1-2 loads of laundry , etc do something that makes you feel like your productive will help you mentally! The key is to PACE YOURSELF. Do a little each day. Accomplishing one or two things on a bad day helps me not feel totally useless. A hot shower or bath eases some of the pain . Do what you can but rest when you can . We have an invisible syndrome that cannot be cured but symptoms can be managed. Support from friends & family goes a long way. Ask them to learn all they can about your health problems because you need their understanding & support. Hang in there, just as you have BAD DAYS, you will have good or decent days 😘😘😘😘

  • thanks for the advice. yes I am in the u.k

  • Hello and welcome :)

  • Hi Amandoak1, I have been diagnosed with fibro for 16 years and still feel like you describe but we do have good and bad days , it takes time to come to terms with not being able to do the things that you were used to, sometimes you can with a little extra planning like if you are going out rest up the day before and conseve your energy for the important thing to you, .

    Fibromyalgia is a difficult thing for others to understand but your doctor was right about a support group as I have only been using this site since October and what a difference it has made in my life, I was like yourself always bubbly and out going but I started to withdraw into my self and push family and friends away as they didn't understand and I got fed up teying so I just shut myself away in my room totally not like me , but it is amazing just being on this site with people who do understand what you are going through and its so much easier to get things of your chest as I tended to keep things to myself which only made things worse, every one here is friendly and helpful with tips on how to manage your illness,a lot of people as using the spoon method if you google it explains how to priorities the imptant things in your day to day life. You said that when you take your medication that you are drowsy maybe you could speek to your doctor maybe a little tweek to your meds might help with the drowsiness or taking them at different times as i know that some meds if you take then too late at night they can leave you feeling drowsy through the day so small things like that may help you as you do need your medication especially to keep on top of the pain as its easier to keep on top of it that when you are in a lot of pain or bad flare up it harder to get control of it again, fatigue is a major problem for a lot of us but again it is part of the illness if you go on the main fibromyalgia site they have a lot of information and booklets that you can get which may help your family to understand what you are going through, I wish you all the best you will enjoy the site.

    Loraine x

  • hi Lorraine

    Thank you for your kind words and support. it means a lot xx

  • Hello and welcome to our lovely forum. You will find a great deal of support and a lot of genuinely lovely people here.

    If you take a look at our mother site

    fmauk.org

    information on there. The homepage on the right in blue has some pinned posts and other things on locking posts.

    This will mean only people on hear can see amd stops social media accessing information.

    Keep sharing we are here to support you.

    Good luck on your journey my friend

  • Hi. I just read your post and it was like I was reading my own words, I could've written that. I was assaulted by a patient at work and, while I'd had some symptoms before, everything just got so much worse after. I understand the downward spiral and the feelings of having no future....but....YOU DO HAVE A FUTURE, it's just not the one you had planned on. When symptoms are 'high' we can't think straight, as you said yourself we 'drown' in the pain. Please wait for a better day because it will come and on that day you can think about a new future - it will include fibro that's true and there will still be flares - but in between you can still be a necessary part of this world.

    Could you go back to the docs and review your meds? I know about the drowsiness, they turned me into a zombie! I've come off mine because the side effects are worse than the pain. I have warm baths, use a heat pad. I usually potter about the house because sitting/lying still doesn't help so I sit for a bit and then move gently to keep things moving. Maybe your GP could tweek the dosage or give you something different that would suit you better?

    xxx

  • hi ginawen,

    Thank you for your kind reply. it really helps reading everyone's replies.

    I am due to go to the doctors thus week and my rhumatol has recommended to him that he refers me to pain clinic. I hope they can help.

  • Amandaok1, going to a pain clinic will make a high difference. They can help you ! 😘

  • hi. my Dr is now referring me. do you know what they do there at all??

  • thanks everyone for your replies, kind words and good advice. it is very much appreciated.

    xxxxxx

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