Is this normal?

Posted , 10 users are following.

Hi, I've never posted in any of these groups before as I hate to dwell on things but I'm desperate for help!

I'm 26 years old and was diagnosed with fibromyalgia about 2 years ago. Back then it was manageable. I was always very active (used to go running, did mechanics, worked very physical jobs, would do very physical things that would shock most people because I was a 'girl'wink I started to deteriorate about a year ago and.have been on many different medications.

About 3 months ago I went down hill very fast and my doctor said there was nothing else they could give me or do to help.

I haven't been to work for 3 months as I can hardly stand up. I've been to the pain clinic and am registered to start at one of there seminars (full until May!)

I've tried acupuncture, massages, changed my diet, I drink only water. I've tried so much, I force myself to walk my dog but have to have somebody with me to help me as I can't always walk on my own, but hey at least I'm out of the house and doing what I enjoy.

I'm at a loss as of what to do now. These last few weeks I'm just getting worse and worse, I can hardly stand, constant pain, I had to be carried to bed one night and this morning I couldn't get up!!

I have a very high pain threshold but this is unbearable. It's getting worse daily, and I'm so scared!!

Ive had tramadol, gabbapentine, pregabin, amitriptyline & naproxen.

I'm now on just cocodamol(8x a day) sertraline (for depression) mebeverine & cosmocol (for stomach issues) and I take vitamins.

What else can I do? Is it normal for me to be going down hill so quickly, every week the pain finds a new place and leaves me stuck on the sofa unable to move.

Any advise is much appreciated.

Sorry for such a long rant.

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  • Posted

    Hi Nemma, I'm really not much use to you, I was only diagnosed on Monday, and you seem in an even worse state than me sad. However a couple of things struck me, and perhaps they are not very usefeul but I thought I'd say, just in case.

    Can I ask how long you have been on the Sertraline?  Is it relatively recently? I only ask because I only lasted 6 weeks on it and it was absolute hell. Made me feel 100 times worse! I'm now on Citalopram but apparently Fluoxetine and Paroxetine are better choices as they can also help with the pain, so I'm going to ask my GP about that the next time I'm there.

    Also, I don't know what the other two are but I was on cocodamol but stopped as am wary of the side-effects, and I've heard the body can become immune to pain killers and they can actually make the pain worse in some cases (it was on a tv prog about pain). Perhaps it's worth reviewing your meds with your GP??

    Sorry, that was probably absolutely no help! I'm so sorry you are going through this at such a young age.

    Best wishes xxxx

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    • Posted

      Hi Mari,

      Thank you for your reply.

      I've been on the sertraline for about 8 years. I've been thinking about trying to change to fluoxetine to see if there would be any benefit. As for the voicemail, they seem to be the only pain killers that don't give me terrible side effects 😑

      Have the doc's given you anything?

      Please don't apologise its lovely that people try to help, thank you.

      Good luck with your battle 😊

      Xx

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  • Posted

    Hi Nemma so sorry your so ill maybe you should go back to our Dr you can't carry on like this ,A lot of the medication I had made me much worse my Gp decided to start from scratch one symptom at a time this was after couple of DRs in same practice treated me like nutcase imagining things I now take morphing for pain and fluoxetine for depression naproxen for joint pain and omeprezole for stomach seems to be working for now I couldn't think straight with garbapentin but when you need rest don't try and fight it I know that's easy to say but it's how things are worry makes you worse don't be put off see all the GPs you can until you find one determined to help they are out there my thoughts are with you take care xxx

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  • Posted

    Hi Nemma sorry for pain but I can relate. I have been off work since Jun 2016. I was very active working, exercising the gym regularly, pick up kids from school etc. Then one day I pull a muscle my back and became and the high levels of pain became even worse. I went for walking very weak to walking with cane and now a walker regardless of the 20 sessions of aqua therapy. I can only sit up 2 hours and pain is so unbearable I have to lay down. Still trying to find the right med after 2 years to help with the pain. I tried cymbalta, gabapentin, Lyrica, amitriptyline, Norco, fentanyl patch, butrans patch, Aleve, Tylenol ES 3x/day. Butrans patch helps but very expensive as you increase the dose. My insurance will not cover unfortunately. I would recommend it. amitriptyline helped with my migraines some. I am currently taking Nortryplline ( only been taking for 3 days now. antidepressant that is suppose to help with migraines and neuropathic pain) and gabapentin again because the tingling and burning I am experiencing. I need an adjustment to the dose because it is not helping with the pain. I also take baclofen. Skelaxin is a good muscle relaxer but I had a allergic reaction to it. I have never taken sertaline. I am still seeking relief. I had an PCP, pain clinic, rheumatologist and a neurologist that are scratching their heads. I recently just went to neurologist at University of Michigan that prescribed that list a whole list of meds to try along with therapy. The problem is finding a balance because if you do to much you will pay for it. Stress to is a big factor. managing the stress in your life when you have so many responsibilities. They say exercise keep moving. For it seem like the more I move and try to push through the pain the more the more detoriate physically and pain increase. Praying that you find the right combination of meds and regain physical activity. This my prayer for my self as well. This hard to manage because doctors lack of understanding. Keep pressing your way. Hugsxoxo
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    • Posted

      PS I have had flares but this the worst I have been I can't barely as I as dragging my legs most times even with the walker. I have pain all over literally. I have pain in my neck, shoulders, back, hips, knees, inner ankles, heels. Sharp pain in my head, migraines. tTje migraines are a little better. Brain fog, burning, tingling all over (improved but still present. I have pain in my hands and wrist and arms. So my total body is affected. I also have buckling in my leg and balance issues. I have so much going I probably left something out. Life for me now is really hard. I have to have assistance also because I my rollator with a seat have to be put in the trunk . Even with all this going on it is someone worse off then me. That is what keeps me going and fighting for my life.

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  • Posted

    Oh Nemma I share your pain literally. I've come home from work today, sat in traffic for nearly an hour and I felt like I was going to die from the pain, I know some people will think it's an exaggeration but it was bad. Do go back to your gp, I will be going back to my doctor, I'm sick of this. I hope you feel better soon

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  • Posted

    Thank you all for your replies.

    I have a doctor's appointment next Wednesday. I'm just so sick of the doctor's, every time all they say to me is that there's nothing they can do.

    Today I've spent the whole day on the sofa, I've done dinner and obviously got up for the toilet but that's all, haven't even got dressed 🙈

    Surely it can't be right that I can't move?

    What am I supposed to do about work & money, I've been living off my very small savings for the last couple of months. What do you all do?

    Xx

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    • Posted

      I am currently working full-time just about, I went to my employers about reduced hours a few months ago on the advice of my physio, but work refused, I am trying to find a job that might be flexible, but it's hard, but ideally want to try and work from home and an office if I find something. I've felt like overdosing and when I have bad days I cry and think I should just die. It's horrible because nobody understands so I get relief at least from all the supportive people on here. Work wise maybe see if you can do something from home, I know you said you're used hard labour but maybe do Avon as a little thing, these days you just send a link so with email access get friends family, fibromyalgia people (lol) to buy? Avon can still be stressful but it's trial and error a bit like our meds although they're more error 😔

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    • Posted

      Morning Nemma;  I can't really give you much more than the others have: however, am wondering re you may need what some of us are needing to take for our "overall pain relief".  I have been taking 20mgms (twice daily) of Oxycontin SR for over 15 years now, and by what I have been reading from your's and others' posts, maybe this is something that you and others may also need to look at ?? It was at my Rhuematologist's instigation (and YES, I too was Very hesitant); but seem to have better pain control than many others do ?

      ?yes, t, too take other meds as well, but feel that the Oxycontin seems to "enhance their action" on my pain ??   

      Perhaps if you can get a referral to a Rhuematologist and see what they think ?  Some have tried Fentany Patches, but from what I know of Fentanyl, this is only a "short-acting" medication, so would not have the same Long-term action of Oxycontin SR.   Read up on this medication, and see what you think. ??

      Also very important, If your body is telling to STOP, then please do.

      ?As to your concerns re finances (which all of us have, too); have you considered speaking to a Social Worker who knows the Right people to help organize assistance in this/other areas ?  If worse comes to worse, here in Australia, we can gain access to our Superannuation in times of Extreme Financial Emergencies / Early Retirement as a result of Illness :   Is this an option for you as well?

      ?Do keep in contact and let us know where you go from here, as we all do care, and what you learn, can also help others.                Bronsmile

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    • Posted

      I feel your pain. Ivery been using my savings but that's about done. I need to go back to work. The stress of worrying about finding a new career in my 40s terrifies me. But I was a retail store manager for years. I can no longer physically do it. So I have to figure out a new skill set that pays.

      I'm on my own so it's even more stressful. Especially since my bamk account was hacked and emptied. Luckily my bank gave me back my money. Stress just makes me have more flares and symptoms worse. It's so hard to get diagnosed but even harder to get disability.

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  • Posted

    Oh Nemma you poor sweetheart! So sorry to hear about all your symptoms and pain! Well my dear, you sound like so many FM sufferers and you seem to have been an over achiever as many of us were. What is it about some of us women who never seem to be satisfied with our accomplishments, that we seem to have to push ourselves beyond our limitations! That is like a disease in itself. You have been very hard on yourself sweetie. This world seems also to encourage women beyond our physical strength. We have to be amazing mothers, work outside the home, be everything to our husbands, be the best friend ever, and exercise! Well, that goes beyond what is normal! Gym membership, running, jogging, weight lifting, 'Power' walking, swimming, biking, hiking, raising our kids....looking like a celebrity in all those touched up magazine shoots! Oh my goodness! Would we ever expect so much from our daughters, nieces, grand kids, etc! We just never seem to be or do enough. And the pressures and expectations we put upon ourselves, is often ridiculous.And some of these can overload and overtax our nervous systems and the tension in our bodies and minds can overwhelm us and of course cause our systems to protest and or break down. I feel so much compassion for women today. The demands are often extreme and outrageous! I cannot give you any advice on meds sweetie because I only take an Ibuprofen at times when I get a bad migraine. The ladies are in a position to help in that regard. I cannot seem to take meds because of the side effects. I am super sensitive to chemicals. But I have discerned over the years that anxiety and unbalanced expectations of ourselves, have often contributed to the onset of Fibromyalgia and other Chronic conditions. We would not even make demands on our pets to perform or run or walk any more than they could. We cuddle them and let them nap and pamper them with attention. Why? Because we recognise their limitations and we don't want to be cruel in any way. And they are animals. Yet the demands and expectations we place on ourselves for 'perfection' and performance are often out of control and way over the top. We no doubtedly also watch our men to discern problems in their emotional and physical health and we worry about them. We want to make sure they are ok. But how do we often treat ourselves?! Fibromyalgia has been a very wise instructor to me. I have had to reevaluate my thinking and my own view of who I am. I have had to do some real soul searching to see why I had put so many unreasonable expectations on myself. I have learnt to be kinder and more balanced towards ME. I have had FMfor over 30 years now.  I think what you need the most at the moment Nemma is Rest and Relaxation and a Reboot. Your body is protesting. Treat it with tenderness and some compassion as you would any loved one. Stress only aggravates our symptoms. Give yourself a chance to recover somewhat so that you can think more clearly and make a better plan for taking care of yourself. Things will work themselves out in time sweetie. You are never alone in your struggles in researching and getting the best treatments that work for you. Never despair. People here care and can relate to your frustrations and worry. One day at a time Nemma. Warm hugs! Maggie xx

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  • Posted

    Nemma I am exactly like you , when my pain is so bad I can't get out house for weeks on end , I don't plan things these days if I feel ok I call my daughter to come and take me out even if it's only for an hour , I can't give you any hints it tips as I don't have any , but don't give up and keep trying to take your dog out gentle hugs your way , make the most of what you have xxxx

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  • Posted

    All of your kind words have meant so much to me! Sometimes it can get too much and its so lovely to know that I'm not alone.

    I've got the drs on Wednesday so ill also try and get referred back to the rheumatologist as this is a million times worse than when i was first diagnosed.

    I'm struggling with the lack of energy atm I find myself watching other people doing normal things and wishing I had the energy to get off my sofa.

    I'm going to look into how I apply for disability benefits or any other kind of help. I'm wondering if I need a support worker to help me as it all seems so scary and daunting.

    I am trying to be easier on myself thanks to all your support

    Xx

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