Believing it's Fibro

Posted , 6 users are following.

I was diagnosed with Fibro back in January after 5 months of pretty much just not feeling well. It all started with random muscle twitches which threw me into full blown anxiety which lead to a achiness, stiffness, etc. I was tested for Lupus and all types of other things through blood work, then referred to a Rheumetologist who confirmed it was Fibro. He didn't really do the tender point test, but I'm pretty sure I have them, especially in my upper back because that's where I have the most problems. Anyway, once I was diagnosed I felt myself start to feel better especially as my anxiety decreased. Then in August I had a sinus infection that would not go away, and I have not felt right since then. The twitching is back, my neck, shoulders, back, arms, and hands ache every single day. I feel so stiff sometimes and that just leads to more achiness. I've had a few days where I feel a lump in my throat, and randomly get muscle type feeling pains in my throat/neck area. Anytime I have a new symptom, my anxiety comes back. I start to question the whole diagnosis which I think makes me just feel worse. Anyway, I'm just wondering does anyone else go through this? I'm tired of worrying I have something else wrong with me. I want to accept the diagnosis and cope with it without being scared every time something new happens. My rheum said Fibro patients tend to need a lot of reassurance and I could come in anytime I feel that way, but I don't want to make that a habit. Any suggestions on how to move on from this and not feel so discouraged/anxious??

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  • Posted

    Hi Faith2016 You can go through different emotions with fibro. 1/ denial 2/ anger 3/ grieveing for the person you use to be. 4/ acceptance. I was diagnosed in 2014 after years of seeing different specialists tests galore. my gp then sent me to see a rheumatologist who then did more blood tests bone scan 18 point pressure test. Blood test showed I was low in vitamin d so tablets were issued by my gp. Rheumatologist gave me a leaflet on fibro and discharged me back to my gp.stress worry doesnt help our condition it makes our pain worse. paceing our selves is very important, as over do things we end up paying the price for it. Having fibro takes getting use to and to adjusting to how you are now. taking a day at a time. I have personally found that not focussing on fibro and focusing your mind on other things can help. I have other health issues as well as fibro I just try push them all to one side. just take each day as it comes pace myself learn my limitations on what I can and cant do. be kind to my self treating yourself helps as a pick me up when your not having the best of days. some areas have fibro support groups. so thats worth checking if your area has one. some areas offer hydrotherapy accupuncture your gp can send you to cbt therapy and also a pain clinic. their is always help support on this forum take care
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  • Posted

    Hi Faith, it's pretty sh*t eh sorry to be a bit blue( probably get ticked off for that lol). Yeah I go through all sorts of stages most of it panic lol. To be serious about the whole thing. It's pretty debilitating. The symptoms of fibromyalgia are so vast and everyday something different aches on top of something else it becomes a vicious cycle at first. My Rheumatologist asked me if I could differentiate between the RA pain the fibromyalgia pain. I told her at first no but that changed when I started getting spasms...everywhere ! Every muscle is affected by fibromyalgia no matter how big or small. Fibromyalgia not only effects the muscles though it also effects the surrounding tissue ligaments tendons etc. It's easy to think it's just muscular but what you need to understand is it actually effects much more than that. I have had the twitches cramps finger pain neck pain jaw ears headache backache painful legs calf's thighs burning pain when just walking up my stairs. Wrist pain tendonitis carpet tunnel syndrome swollen ankles the list goes on its endless. Today I have stayed in bed. My legs are burning and aching with pain. I've tried to mobilise myself but it just makes it worse. I have ear ache a sore neck and collar bone my right knee is very sore and left elbow. It's one of those days. Tomorrow it will be different I maybe a bit better I may feel worse. This condition does what it wants whenever it wants there's no pattern to it and I think that is what gets to people the most. Your always questioning the validity of your diagnosis either hoping it's something else or worrying it's much more serious and you have something far worse than fibromyalgia. I have often thought what if it's this or that ? The trouble is fibromyalgia is for those who suffer from it is their worst nightmare. It's unrelenting in its pain and discomfort and when you think your having a good day it can change in an instant. One thing I have learnt about fibromyalgia it can effect anything at any time including your mind. You have to channel your thought process to try and avoid lingering on the pain. Once you get all wound up because of the pain it's hard to release yourself away from it.

    I occupy my mind by doing puzzles reading a book having a hot bath using any means possible to negate the pain. Try bath salts aromatherapy oils muscle soaks like radox have the odd massage or reflexology treatment. All of this helps.

    I hope you find something that aids your symptoms and of course talking to others about how they handle their fibromyalgia also helps.

    Hope you feel better soon. Don't give up there are people here who can offer support and advice.

    Best wishes KS.

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  • Posted

    Hello I was diagnosed with fibromyalgia in September last year I was fine one day then I had aches and pains all over it had pleurisy and a hernia I cry all the time with the pain and I feel there is no let up. Your the only other person that's said about the lump in the throat! I've had it all year and it's so depressing I had a camera down there and they found nothing..iv been told it's stress but that doesn't help! I hope everything goes ok for you. Xx

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    • Posted

      Hi Grumpy bear, so sorry to hear your having problems. I have this problem as you know. I had a ultra sound because I thought I had a growth in my throat. It really gets to me. I also have a horrible pain in my neck and throat when I blow my nose. Does this happen with you ?

      KS.

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    • Posted

      Hey it was a hiatus hernia. I have a constant lump in my throat and constant saliva. (Sorry I know that's horrible) yout right the pain is ever changing.at the moment my wrists are unbelievably painfully and my feet are the worst constantly but nobody seems to understand that one.

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    • Posted

      Yeah the feet get it too after all they are what take our weight. If your on your feet they are supporting every kg of flesh and bone. It's not insurmountable to think your feet won't be effected by the fibromyalgia. I have had pain in the soles of my feet. If I kneel down in a pair of shoes and my toes are bent along with the arch of my foot and I stand up a minute or so later I can't walk due to the pain. So I avoid that scenario. If I have to get down on the floor I sit down with a cushion. To aid my feet I bought scholl gel inner soles for my shoes. If my throat or neck gives me a hard time I fill a hot water bottle wrap it in a small hand towels and warm the effected area. It helps sooth your aches and pains sometimes but not always. I will try any remedy. It's trial an error. Sometimes just a hot bubble bath helps all my muscles. Don't give up or you will fall into the trap of being in constant pain. If you have pleurisy you need antibiotics. Also this may sound odd but lying on the effected side with a hot water bottle but not too hot does actually help. Try it out. I hope you get some relief from your pains soon. Good luck. KS.

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    • Posted

      Go for it and get yourself a nice soft pillow and snuggle up to it. Relax and direct your thoughts on to happier memories. I find relief if only for short while by trying to forget about the pain and channel my thoughts into other things.

      I've just asked my GP to refer me back to my physio for further hydrotherapy. This really helps wish I could afford to buy one. A hydrotherapy bath that is not a physio lol.

      Take each day as it comes because what fibromyalgia does is it changes it's guise one day it's this the next it's something else or its multiple and then it gets stressful and doubt creeps in. Is it really fibromyalgia or something more sinister ? I have been there and got that t-shirt lol. I found it confusing so much pain in so many different areas on different days it drove me mad until I broke the cycle. Don't get me wrong it doesn't always work but having a distraction certainly helps. Find something you enjoy doing which do sent expose your limitations and go from there.

      KS

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    • Posted

      Hi Grumpygear; yes to the "lump in throat"....last year this was one of my main problems.....I found it Very difficult to swallow, and had to put pressure on my Cricoid (adam's apple) to let food/fluids go down (otherwise I felt that they were going into lungs/choking).  At present this seems to have "settled" until next time Hey???

      ?As to Faith's having such a "good" rhuemy who tells her "to come back anytime", I feel she is very lucky to have such an understanding rhuemy, as many of the drs/therapists that I see (and have been seeing for a Long time), now seem to be giving me the impression that it is up to me, now, and am even getting the impression that my physio "doesn't really believe in Fibro either".....I am going through severe Dizziness at this time, and when I mentioned it yesterday, she seemed convinced it was to to "with crystals in my Middle Ear, and proceeded to "try and re-arrange them"........and then tells me I have to do More Exercise, as the pain in my gluteal muscles is do to with not getting enough exercise.

      ?So Faith, do go and talk to your Rhuemy when you feel something needs explaining/needing help with, as it seems you maybe a lucky one.        good luck, and keep letting us know how things progress for you, as we all learn from each other, and you may have something new to tell us.                               Bron

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    • Posted

      Hey thank you for replying.today iv learnt I'm not on my own with this lump and thats good for me because that's how iv felt all year. I hope you are OK atm. I agree with u too, most drs iv seen arnt that helpfull which is very upsetting.

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    • Posted

      Hi Bronwyn, I just read your post to Faith. I hope you don't mind me jumping in and asking you some stuff. You mentioned dizziness. Wow ! That's interesting and I say that because I brought this up with my GP. Over the past year I have suffered with dizziness loss of balance severe vomiting and I've been hospitalised on a drip for 3 days and on another occasion 2 days. It's my worst nightmare. I've seen one ear specialist had a MRI both ears tested and nothing found. I get servere neck pain it then turns into a severe headache but on several occasions it's caused mayhem. I have had dizziness so severe it causes me to be sick profusely until I'm at the point of vomiting blood that's when my girlfriend phones for an ambulance. It doesn't always progress to that but has on 3 occasions. I haven't posted this before. I wasn't sure if it was connected to fibromyalgia my GP thinks not and my Rheumatologist thinks it's possible but I'm the only person she knows who has this problem. Can you please tell me if you have had any similar experiences. Do you feel it's connected to your fibromyalgia ? My GP seems to think it's menieres disease but I have my reservations.

      Cheers KS.

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    • Posted

      Thanks Kevin;  Yes I believe it's to do with my Fibro....as others before have mentioned the same problem.  I have had minor episodes previously, but it has been getting a LOT worse over the past 12 months.  I have been falling over/losing my balance, and hence causing other problems (last major fall I damaged both hips and elbow, plus hit my head on the concrete floor of garage).   There are many times, that if I turn around too quickly, without thinking, I lose my balance and have to grab onto the nearest stable thing nearby.  It is concering my family, and my husbane doesn't like me to drive, ( which I don't do unless I have to....but then I am ok, really, as I am not trying to balance/move around hey?).....the main times I find this dizziness is when "rolling over in bed....standing up too quickly after sitting, or as I said previously, turning around too quickly..There have been a few times that I feel nauseous, but not to the extent that you do (I have a prescription for Maxalon that I take when I feel the nausea coming on, and this, I feel probably stops me getting to your stage???

         As to the shakes and tremors, this has been an issue since the very beginning, and has progressed over the years......there were times that I believed I had a thyroid problem, and still feel there maybe an issue, as I have had a lot of mucle wasteage since beginning of year, my skin has become very dry, and my tiredness is increased dramatically.

      ?As for neck/shoulder pain and the resulting headaches, this too is a problem for me.....and I never seem to convince myself or others, if it is the Fibro affecting the neck muslces, or the 0A that is in the R) side of my neck (there is no cartilage on this side, hence all the nerves coming out of this side are pinched between the vertebrae......so, ahem, as another lady puts it)

      ?So thankyou again for listening, and hoping we can find "someone" to believe us re this symptom?                      till next time,  Bron

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    • Posted

      Thanks Bronwyn, it's nice of you to reply. My GP recently prescribed me some hyacinth patches. They really help. I had tried all sorts of drugs remedies etc. We sat there one day and went through my options and came up with these patches about the size of a penny. They really do help reduce the sickness levels but they come with a warning they make you very sleepy not advisable to use while driving. Hope to chat with you again. Take care. Kevin

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