I think I have fibromyalgia, can I please have some advice as I am desperate.

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Hello, my name is Paula and I am 26 years old. I have been suffering from chronic pain since the age of 18. When it started it felt like more muscle pain in the neck however as the years have gone by it has spread all over my neck and upper back. In the last few years I have started to get the same pain in my jaw and fingers. I am constantly tired and drained and the pain makes me physically sick. I also have severe crunching in my bones when I move. 

I have been to physiotherapists, chiropractors and I have also been seen by a rhematologist who said I was fine and it may just be hyper mobility. I have been told I have slight scoliosis however I believe there is more to it.

I have had an mri scan which showed wear and tear of the back and I had basic blood tests done which were normal but showed my vitamin d was a little low. I go to the doctors once a month for this and I get no help and it is affecting my mental state as I feel so unwell everyday. 

i have also been prescribed many drugs for this and nothing helps my pain at all, they only make me feel even more like a zombie. I believe from what I have read about fibromyalgia that it is possibly what I have but it is so difficult to be taken serious by any doctor.

Some advice and thoughts would be greatly appreciated. Sorry for ranting I am just very fed up now.

Thanks everyone xxx

 

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  • Posted

    Hi Paula, poor sweetie! So young to be in such pain. So you say that you have been to a Rheumatologist? And he has determined that you do not have Fibromyalgia? Therefore perhaps you have some type of arthritis. That is manageable.  If you feel as though your doctor is not taking your symptoms seriously enough Paula, please see another. People often treat doctors as if they were demigods or something but they are human like anyone else and can overlook something or not test adequately to get a proper diagnosis. So don't be afraid to pursue your options sweetie. The fact that your back showed some wear can be some of the cause of your pain. Another important aspect is your stress levels. Have you been under an overload of stress of late? That can tighten muscles and cause a great deal of pain in the neck and shoulders. Fears and anxiety can cause us muscular pain as well. An acidic system can also create pain in the body. A healthy diet can be very beneficial with lots of vegetables and fruit and lean meats. Junk food can strip us of vitamins and nutrients so keeping a balanced diet is beneficial for your overall wellbeing Paula. if you are under inordinate stress lately, is there someone you trust to talk it out and unload your worries and anxiety? This can help a great deal Paula since it will enable you to put some perspective on things. Health worries can be overwhelming and pain can cause us to imagine all kinds of things and think the worst. So take steps to find answers and try not to build up worry in your mind. So far your tests have come back pretty normal. That is a good sign Paula. Massage or seeing an Osteopath may help your pain since it can be more gentle than say a chiropractor. Be proactive in finding solutions sweetie and never despair. Warm hugs. Maggie xx

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    • Posted

      Thanks very much for replying., I have tried lots of different doctors and they just say to me don't ruin your life. No he didn't rule it out he just said there was no way of testing fibromyalgia. I am in agony every single day over my whole body and have been for 7 years. It sounds exactly like fibromyalgia. I have tried many different things and nothing helps my pain. I don't sleep because of the pain and it is making me so depressed. It is so tiring being in pain everyday. I have been referred to pain management classes so hoping that may help. I get regular massages also and get no relief from that. My pain is so extreme and it is everyday and the fatigue is taking over my life sad xx

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    • Posted

      I also understand stress can contribute to it but I have had this for 7 years so I think it is way more than stress and some days I can't even get the energy to get out of bed sad

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  • Posted

    I think you need to see a different Rheumatologist. Of course there is definite diagnostic signs for Fibromyalgia! It sounds to me that you may well have it Paula by the length of time you have experienced these symptoms. Good that you will be seeing a Pain Management Centre. x
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    • Posted

      I know, I feel like my symptoms match up to someone with fibromyalgia but the doctors don't seem to care. It took me 6 years for them to even send me to a rhematologist. I just feel so fed up and it is affecting my every day life even though I try to not let it. Thanks very much for replying xx

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  • Posted

    Well I think that you need to perhaps treat this condition you have as being Fibromyalgia. There is no cure at the moment Paula but you can do things to help ease your pain. Seeing a Pain specialist can put you on the right path. I myself cannot recommend medication because I have chosen to treat it in a more holistic way, with some supplements and diet and mild exercise like walking. Other ladies and gents here can give you more advice on medication that may have helped them cope. Magnesium as I mentioned, seems to help many Fibro patients. Epsom salts soaks in the tub can also bring some comfort. On certain days, a hot water bottle is my best friend. I think it is time to stop looking to the doctors to find your relief and to begin taking your own health under control sweetie. Read as much about Fibromyalgia as you possibly can to find ways to cope with this chronic condition. You Can manage it my dear. There are of course many varied symptoms involved and each person has some different ones to deal with. So one shoe does not necessarily fit all, so to speak. You must be proactive in finding what works for you Paula and what brings you the most relief. Also managing your stress is a Key. Stress feeds Fibromyalgia pain. It loves stress! So managing your anxiety and worry can help you tremendously. Accepting your limitations is also a key. Even though you are young and you may see your friends all active etc, don't ever compare yourself to them. That is just self defeating. You are you with your own unique issues Paula and that is what you have to contend and adapt to. And don't try to keep up with others. Acceptance is the first crucial part and then you can deal with this as each day presents itself. One day at a time sweetie. x

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    • Posted

      I know, thank you so much for that reply. It is really nice to speak to people who understand the situation. I have stopped going to the doctors to be honest and instead I have been trying yoga and meditation. I do agree that stress makes it worse. I do manage it quite well as I still carry on with my everyday life each day but some days when it really flares up it is really difficult. It is also difficult as when it flares up there is no pattern to it so it is hard to stop that from happening. I am going to go down the vitamin route also as this is something I have never really tried before. I will definetley try magnesium and vitamin d. Sorry if I seem annoying by going on about this, I really appreciate these replies xx
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  • Posted

    Hi Paula, I read the other responses and I agree. Fibromyalgia is so different for each of us. It has many feelings and aggravations. Since I have 5 bad disc in my neck my pain starts there which when I was searching for an answer to my issues I saw many Specialist. I've seen 5 different rheumatologist that gave different diagnosis. Three said fibromyalgia, one said cervical spondylosis because he didn't believe in fibromyalgia, one said that I was imagining the pain and one said Degenerative Disc Disease, so there you go. You have to see Specialist that are going to listen to you. When I was diagnosed as having fibromyalgia there wasn't a diagnosis code but now they recognize that it is something that deserves a diagnosis code. The pain can be from stabbing to burning, throbbing to aching, etc. It's hard to diagnose for some or they just don't want to recognize that it really is real and not in your head. I know that I have arthritis in my neck which is where my main pain stems from but, when my whole body aches from my neck to my feet I know thats the fibro acting up. As Magpie said, Stress exacerbates the pain so try not to stress. Magpie gave really good advice as well, I agree with everything that she said. I take pain meds for mine because I can't handle the pain as soon as I open my eyes in the morning. Oxycontin works for me and helps me get out of the bed. I was in bed for a whole year before I got the right combination of meds for all the different issues that go along with this crazy syndrome. Ambien for sleep, Cymbalta for depression ( I was taking Cymbalta last year but felt that I didn't need it anymore. Well, I did need it and I am taking it now.). I have restless leg along with the other issues. I definitely know how you feel with being so young and not being able to hang out with your friends because you don't feel well enough. You have to slow walk what you do. Brain fog, hmm. So, I take 5 different medications to help me do some things. Do as much research as you can. You have to learn how to pace yourself if Fibromyalgia is what you have. You need a really good, compassionate doctor. I pray that it will be easy for you to find that doctor to help. I'll send you some websites that you can check out. Gentle hugs...

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    • Posted

      Thank you so much, that was a really good message. I have been given solpadol, gabapentin, naproxen and other things but nothing helped my pain, it only made me feel unwell and more sick than I already o everyday so to be honest I try and stay away from pain killers as they don't do me any faveours. I think the holistic route is best for me also. It is great to be able to come on here and share views and feelings, that will take some weight off me that people can understand how I am feeling. Thanks very much for taking time out to reply to me, it means very much xx

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    • Posted

      Hi, do what you think is going to work for you. Each and every one of us deals with this monster in our own way. I've tried everything, No the pain killers don't completely take the pain away but they sure help me cope. As long as I don't feel like I'm high which I call loopy I'm good. Take care of yourself and be kind to your body. When you have a good day, don't do so much as to mess up the days afterwards. That's when the flare-ups attack.

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    • Posted

      My flare ups seem to be 5 out of 7 days at the moment every week. The other two days I am still in pain but it is more bearable. I am constantly having very severe pain at the moment and have been sleeping on my floor as the only time I get even slight relief is lying on a hard floor. haha the joys. You are all so helpfull. Did any find a big difference by taking the correct vitiamins and how long did it take for you to feel a difference if you have tried them? x
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  • Posted

    Hi Paula, I am diagnosed with fibromyalgia and to be perfectly honest the medical profession (from my own experience) are useless at treating it. I have now started going to an osteopath. I think someone else mentioned they are much gentler than a chiropractor. That is certainly very true. I would highly recommend you see one as I think they would be able to help you. And it really doesn't matter, as such, what is causing your pain. Whether it is fibro or not, there is clearly a problem, and a good osteopath will help treat you...no matter if you have a 'named' condition or not.

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    • Posted

      Hello, thanks for replying. I know they do seem useless. They keep saying to me you're really young and there is so reason for you to feel this way so don't let it bother you. It is so frustrating when they say that, I have had it for 7 years so I am used to be uncomfortable and sore all of the time but being used to it doesn't make it any easier. I will try that, I have never tried that before so that is an idea. Thank you very much xx

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    • Posted

      Hi Paula, yes you are young but age does not exclude you. They are full of it that's why you have to find out things for yourself. Do lots of research. I still do research and I've had it for 17 years now. You have to be your own advocate. I have a good doctor that understands and she knows that I do research and she welcomes my knowledge because she doesn't know very much herself. Check out the disability. There is a wealth of information on there as well. I worked for them as an advocate for a little while because you can work from home. Another thing that I found out is that fibromyalgia is genetic. There are 3 other cousins of mine that have it and mine seems to be the worst. I had to stop working. I wish and pray that you have much success in dealing with and obtaining more information about this horrible illness. I wouldn't wish it on my worst enemy if I had one. I have a picture that I want to send you when I find it. Take care of yourself.

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