sphinx

Anyone else with Fibromyalgia

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I was diagnosed with fibromyalgia 6 years ago after and acute something they are not sure what put me in hospital the previous year and left me with pain exhaustion and confusion. Like many people with fibro reseach after diagnosis leaves me feeling that it was there a long time before only mild enough to not affect day to day life - the idea that just walking is possible with no pain whatsoever is alien to me - I have always hurt only when younger I thought it normal - something everyone just got on with.

Since diagnosis I have twice had to go onto anti anxiety medication when I had problems with uncontrolled anxiety (stopping the car every 2 miles because I am convinced something is going to come along on my side and hit me head on is not normal). I believe I am lucky in that I do not have any issues with mental symptoms - growing up my mum had first post natal (after brith of my brother) and then bi polar - my childhood involved visits to her as an inpatient in a psychiatric hospital. This meant from a young age I knew and accepted mental illness the same as physical illness which I believe has been hugely helpful because I do not shy away from symptoms - I recognize them and get them treated.

I was wondering if there was anyone else with experience of fibro and possible anxiety symptoms - I know there is discussion that the anxiety in fibro is mostly due to neuro transmitter imbalance from the fibro rather than outside stress factors and wondered what others thought of this.

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This interests me a lot sphinx beacuse when you say you have always hurt a lot, thats me. I just always hurt a lot. Even my skin hurts, it burns. Docs said stress and anxiety, offered me ssri's, I said no thanks and just try and live with it. It sometimes isnt so bad then some days, like today in fact I'm just sore, all over.

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I have not been diagnosed with fibromyalgia, but I often wonder if I might have it. I have dealt with pain since a kid and kind of just thought it was normal, but lately I have realized it is not normal, as my dad kids that I am old when I do not want to do stuff because my toes or knees hurt. I do not let it stop me most of the time, but things sure would be more enjoyable without the pain.

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I would honestly advise both of you to get some of the latest studies off the internet - the ones dealing with blood flow in the brain and neuro transmitter differences that show fibromyalgia is a neurological condition not a waste bin diagnosis - and take them to your GP and make them listen. If your GP wont listen try a locum and keep trying until you can get a referal to either a rheumatologist or a neurologist - it is only recently it has been considered neurological and much treatment and diagnosis is still in the hands of rheumatologists, this is nothing to worry about they do know what they are doing. If you are up on choosing treatment centres I do recomend the Royal National Hospital for Rheumatic Diseases in Bath ( http://www.rnhrd.nhs.uk/ ) - I am lucky enough to be in their automatic catchment area but I know they take referrals from all over the place and they are very good especially with the multidiscipline approach.

I will see if I can dig up some useful reasearch for you to give your GPs - just remember if you run into the "its all in your head", "its woman problems", "its not a real condition it just means nobody knows" " its just a wastebin diagnosis" type attitude to walk out and find another doctor - it is real, and there are things that can be done to help including some medications for some people, but it is essential to have your doctor onside.

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Thank you so much sphinx!! I really appreciate your advice, I have an appt coming up and I will do that :)

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I do not have fibromyalgia, but I have a friend who does, and it completely runs her life :( I can't imagine being strong enough to deal what she deals with, medically, on a daily basis. The symptoms she has are many, and I know that anxiety is one. What a horrible thing to have to live with - I hope those of you who suffer from this disease are able to find some relief.

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I think it is one of those things that if you stopped to think about it you would collapse in a heap and give up entirely. I concentrate on what I can do and have achieved rather than on what I used to be able to do and old plans for achievements - I mean I am not likely to be climbing mt kilimanjaro under my own power now but there are other things to aim for.

I think recognizing anxiety and depression in the condition are essential - because they are symptoms that can be dealt with. There is a problem with some doctors still thinking that the fibro symptoms are part of depression and the problem is therefore depression but once you get it so you have a doctor that understands constant pain can result in getting depressed rather than the other way around then effective treatment is possible.

I have twice been on citalopram for several months when the anxiety became a problem - when I wouldnt visit new places or try new activities because of worrying about people not liking me - and when I have had the constant what ifs chasing around my head etc - and both times it sorted the problem and left me with one less thing to worry about if that makes sense lol.

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How is fibromyalgia diagnosed? I have always been very suspicious that I have it but I have been under the impression that there is no way to diagnose or test for it, that is is more of less decided if you test negative for other ailments. Is there a way to know for sure and if so, is there an affective treatment available?

I am going to look into the link you posted sphynx, thank you.

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Diagnosis can be by the pressure point test where the doctor will touch you at various points all over your body - usually while talking about something else or seeming to do something else. People with fibromyalgia have pain reactions to specific points which will be noted - a certain number of points reacted to and diagnosis is made. This does usually happen after other things have been excluded as history is really important as well.

In some areas now diagnois can also be by an fMRI scan - those with fibro show distinct changes to blood flow in the brain which shows up this way - you show the blood flow pattern you have the condition.

For those who want to give information to their doctors about the neurological picture there is this link

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These pressure points she is talking about are common ones that every fibromyalgia has. They may not have them all, but they will have multiple ones. I also have Depression and Anxiety which I think kinda often run hand in hand with FM due to the chronic pain your in and in many cases such as mine Chronic Fatigue Syndrome also will run hand in hand. Like Sphinx stated above many patience with fm believe they've had it much longer than from when they was diagnosed as I do. But just to give you an idea of what it's been like for me personally I first really started noticing something wasn't right when I kept getting what I thought was "the flu". it would seem like I no sooner got over it when i'd be achy all over my body again, finally after mentioning it to my Dr. he checked some key areas such as the back of the hips, the back of the neck, shoulders, key points in the arms and legs as well, after about going through the roof upon him pressing on them he told me he believed it to be fm, but since being diagnosed I've also noticed problems with my short term memory and inability to concentrate or focus, what is often referred to as "fibro fog" I don't know from day to day how i'm going to feel when I wake up, my skin is tender, even just have the cat walk across my lap it makes me nauseous, even on my best days I always hurt especially the back of my neck, but when I'm at my worst not only does every muscle, fiber, tissue, and joint hurt but it affects my hands horribly and i'm unable to hold a full cup with only one hand.

Also like Sphinx mentioned if your doctor doesn't believe you and gives you any of the above mentioned excuses then find another doctor. More and more doctors have learned that it's a real problem and not just "in the mind" I would recommend keeping a journal of any and all not normal or typical things that you may notice such as those I mentioned above. Also if you go to the national fibromyalgia Institute http://www.nationalfibromyalgiainstitute.org/ they have a lot of information on there also you can go to http://www.autoimmune.com/FAQ_eng.html and see what they have found in way of lab test. Non of these test are technically specific for fm, however they have noticed higher levels of APA (Anti-Polymer Antibody) Assay detects IgG anti-polymer antibodies in human serum. But you can find more Q&A's regarding these tests on the site i put up top and i'm sure you can also do research online to find even more answers than that. Whatever you do, don't allow your doctor make you feel as if it's all in your head because even if it's not fm, there's something causing it and I also have to say that depression can also cause body aches.

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For me fibro fog is the worst - I value my intellectual integrity above all others. I sometimes notice it is affecting my thought stream - like tonight - and i get frustrated because I cannot explain what i mean clearly - its a bit like dyslexia but typing - and i cannot access the words I want either. Speech (believe it or not lol) can get worse and reduces to grunts with mad arm gesticulations. What is alarming is when friend learn to interpret :o (I once walked up to a group of fishing aquaintances and grunted and err ahhed at them while waving my hands and one of them came back with "so you have ......... and then........" and accurately came out with everything I meant to say. I wasnt sure whether to be pleased or as embarressed as hell - I was like the catwoman on the Simpsons :rolleyes: .

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I know that feeling all too well, I experienced the same exact thing, my speech which seem to be more effected by stress got the same way. I'd try to say something and I'd be like ahh. wwww. I just couldn't speak, docs thought I was having a stroke but it turned out to be an anxiety or panic attack but it was everyday, finally I'd try to say something and my daughter would have to tell them for me "Interpret what I was attempting to say" so embarrassing. As for the fibro fog....I hate it, I know what I wanna say but can't get the word out. One day I needed the vacuum cleaner but I couldn't get that word out so I had to describe what it's used for "you know that thing to clean the rug" and I'd show the hand motion. This is a very common thing and the most frustrating as well as short term memory loss. Just horrible.

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Well I went to the doctors this morning because I have been suffering an increase in symptoms and he has started me on gabapentin. I dont know whether I am more scared of the side effects likely - or that it wont work at all. I have heard so many conflicting reports from people - for some its a wonder drug, for others it does nothing but make them miserable, and others find the benefits outweighed by the side effects.

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Any drug you take will do that because everyone's different so for some it will be a wonder drug as to where others it will do nothing. I personally have been taking Gabapentin also known as Neurontin I've been taking it for a different reason which even though I have fibromyalgia, I also have extensive nerve damage which for me it has relieved some of those symptoms quite well, however for my fm it's done nothing. I haven't had a problem with side effects from this medicine but once again, everyone is different therefore it may act differently, at the first sign of any of the more concerning side effects I would go to the doctor immediately just to be on the safe side.

I know it's difficult but try to stay positive as best as you can and as I'm sure you know also try to remember that the more you get up and walk around even in your house/apartment the more it will ease some of the pain. I know that when we have flare up's we don't want to get up because the pain is too intense but I've also found that if I can just force myself to do so it will ease it. If you start having the cramping up in the neck area what my sister had me to (she's a licensed message therapist) do is get a warm pack for me moist heat was better you can get a hand towel get it wet put it in a quart size or gallon size zip lock baggie make sure when you zip it up all the air is out of it, put it into your microwave if you have one for a minute as hot as you can stand it, then get a dry hand towel to put between you and the hot pack. After leaving it on for 15-30 minutes, she had me to slowly stretch my neck from side to side and back and forth. Again you have to do this gently and slowly as to not injure yourself, but It helped me tremendously. I'd had this muscle spasm and headache that wouldn't stop for days and finally that helped I usually repeated this twice a day until it stopped with the spasms.

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My doctor is very careful with meds - and also I am known to be fairly anti medication who approaches the idea of any sort of medication very warily and with lots of consideration, and I follow instructions to the letter. We had discussed gabapentin before but as I felt the level of symptoms was something I could cope with I did not want to take extra medication - however of late symptoms have been less easy to cope with so something more was needed. I will keep a close eye on side effects and try and find a balance again. So far my neck has not been subject to cramps - although I get what I describe as the lit petrol being poured over my shoulders and down my back effect.

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I'm new to the forum, but I'm happy to see a discussion about Fibro. I have had anxiety and panic disorder since childhood, and now in my 30's my symptoms have gotten worse to include Fibro. This all came about as I was trying to complete my Master's thesis and some major family troubles occurred. A lot of people say that the symptoms of FM start after a trauma or very stressful time, or severe illness. I thought I was going crazy as it felt like the left side of my body from my head to my toes was on fire! I have seen my doctor, and I am on medication which for the most part brings my symptoms down to a dull roar. Have any of you researched alternative treatments? I've met a full people who recommend magnesium and also getting some relief by taking some of the arthritis pills that eleviate joint pain. What have you guys heard?

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The trouble with fibro - and any chronic incurable illness - is people are so desperate for relief it opens the doors to shysters and quacks who will promise stuff to make money. There are also of course all the genuine people who have found something relieves their symptoms and thinks it will help everyone. There are an awful lot of diet regimes out there, supplement recommendations the lot. All I can say is read them carefully and dont part with any money - and if anything says "the cure they dont want you to know about" then it is not a cure it is a scam. Some of them are now quite subtle in doing this with lots of free hooks that lead you so far in before you get to the bit that "suggests" donating so you can support so and so who will guide you through the last bit. They get people to invest personal feelings in them so they will declare they feel better and havent been ripped off to protect their own feelings. If there was a cure it would be shouted from the rooftops and all the big responsible charity forums would know it.

I am not saying they wont work for you - some of the stricter regimes do provide relief for some people but please don't pin your hopes on them.

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I agree with sphinx in that you do have to be careful for scams and don't put out any money, but I also believe if it's natural and you check with your doctor to make sure it can't harm you and you're looking for alternative ways to help you with pain, depression, insomnia etc then I don't see anything wrong with it. Who knows one of them just might work for you that's exactly what I'm looking into including making a CD for my self with different weather sounds on it to help me relax in the evenings and light and trust me when I say light haha for me it's light stretches to help my body relax in the evenings, so no reason you can't try these alternative things for yourself but research it, then learn how you can do it on your own without paying someone else to do it.

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Goodness! You have just described me! I have fibromyalgia, but had never heard of fibro fog!

I've always been a fairly heavy drinker, not a drunk or an alcoholic, but I have a good tolerance and hold it well and I've been really concerned that the drinking had caused my poor memory! It never occurred to me it could be because of the fibromyalgia.

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I've never been diagnosed with fibro, but I've often wondered if I have it. I've had random pains all over my body for my entire life. I've never asked my doctor about it because fortunately for me, the pains are usually more annoying than debilitating. That's interesting about the "fibro fog," because I sometimes have those "out of it" days. I've always attributed them to lack of a good night's sleep (sleep has always been an issue for me), but now I'm wondering if there's more to it than that. I have my semiannual checkup with my doctor coming up in a couple months, so I'll be sure to ask her about it!

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MagicKitty, insomnia is also affected by FM. Many times, well most times depression goes along with FM which of course leads to Insomnia. That's one of the biggest struggles for me is the Insomnia ughhhh. :blink:

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Fibro fog is truly horrendous - I know of lots of people with fibro who have had doctors test them for altzeimers because of the memory thing - it can be anything from forgetting a word in the middle of the sentence, forgetting the whole sentence to not being able to make logical connections - I had it one year that I knew it was new years eve, I knew my sons birthday was on new years eve, but I did not remember it was his birthday (he was at his dads that year - we take it in turns) my brain just did not click. Some times you cant even think of your own name - I mean the medications dont help but it is the fibro as well.

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I did a little bit of research on fibro after reading this thread yesterday, and WOW. I have a lot of the symptoms - muscle aches and spasms, jaw pain (which I thought was TMJ), stomach problems (which I attributed to the fact that I used to be bulimic), sensitivity to odors, feeling of swelling in the feet without actual swelling, and of course, the sleep issues and the occasional mental fog. I had one of those stereotypical "all the pieces of the puzzle fell into place" moments. I'm definitely going to talk to my doctor about this the next time I see her!

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