Is this my life now?

Hello, I am new to this page... I have seen a rheumatologist and been diagnosed with suspected Fibromyalgia ( he was patronising and treated me like I was putting it all on and it was in my head) but having tests for other conditions too and will see a neurologist soon ( have an under active thyroid and taking thyroxin)... my issues started about 1 1/2 years ago when I had a shooting pain in my right arm and it continued with added aches and pains across my chest (like someone is sitting on me) pains in my feet, ankles, hands, wrists, shoulders and back. I also get pins and needles and cramp --- bad sleep patterns, constipation and headaches... I sometimes lose my balance and people just think I am clumsy. I am a little scared it could be something that is life threatening but also worry that this is now my life and I will be in chronic pain all my life... do these symptons sound familiar? I am so tired of waking up and feeling like I have been hit by a train... how do you all cope with this?

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  • Sounds so familiar I could have written it. I think the way to cope is to really pace yourself which isn't easy when if like me who was very active and did everything for other people and now have to ask people to do things for me. Its hard especially when people don't understand how you feel and look at you and say "you look well". Just want to scream "I feel like s***". The fatigue gets to me the most as it goes beyond tiredness. You are at least seeing a neurologist who may help. I never got to see one properly. I asked my GP to refer me to a neurologist as I had seen people on here were seeing one for confirmation etc (seems like I have to find out these things and ask for referrals as not forthcoming) I got to see one who put some sort of tens machine on my foot and said I can't get a reading as your feet are too swollen and discharged me. 2 years on my feet are still swollen and rheumy just decided it could be lymphodema. GP is aware but hasn't offered any support or info so again I will have to find out for myself. The only way I cope is knowing my other half believes me.

  • I had my pip today and a lot was siad about my feet Ilnow how you feel

  • Hi Erny. I hope you get a good result from the pip. Gentle hugs Joolz.x

  • Oh dear - you should see another Neuro - I am beginning to hate seeing doctors as the reumatologisut was patronising and cynical - laughed at me ! I hope you find some answers too my love - my partner gave up on me and blames my manic depression which does not cause this pain - this is something entitly different - I find I keep it all in and have to let people down - they don't want to heat about others ailments - glad u have a supportive partner X

  • I get really anxious to see doctors as they bypass what I am seeing them about and end up talking about me having to lose weight or being depressed. They always say it like they are the first to say it and like I haven't noticed how big I have got. Maybe I ought to say "wow I hadn't noticed"! My last rheumatologist told me to ask my dentist to wire my jaw. I cried.I wondered afterwards if she said it to get rid of me to get the numbers down as I sure didn't want to go back and see her. Its rubbish isn't it. we get depressed because of the pain not the other way around. Im sorry to hear you haven't got support of your partner. I can't say my partner is always tolerant especially of my mood swings but he does believe me when I am in pain and knows it isn't in my head like the doctors seem to think. Im so glad I found this site as people here don't mind how much I moan. Take care. Joolz.x

  • I have ms to cut a long story short, no one believed what I was going through until I went private it cost me £600-, he told me he WUD like me to have an MRI I asked him how much that would cost, he ask why ? I told him about not being believed, I was a mature student at uni, and I had used my grant money to come and see him, u think I had hit him in the face with a brick he was so shocked. Anyway he put me over to his NHS clinic I had my MRI within four weeks I knew I had MS, so it was worth every penny I paid out

  • Hi sally3437

    Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I can relate to your symptoms as I suffer with them most days. However, they are also the same symptoms for many other medical conditions. Hopefully your Neurologist will be able to rule them out for you. I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thank you - what a wonderful site- many many thanks X

  • Good luck my friend x :)

  • Sally, Welcome along.

    Started same way with myself,, right arm!

    My three pieces of advise for your consideration !

    Look at diet!

    Learn to recognise when you are getting worked up and the things that cause it,, and slowly start to stop reacting, you will find that your pain levels go up when you react to things, this takes a bit of practice but you can get very good at it over time.

    Stop taking people with the title Dr as seriously as they take themselves ! as far as I'm concerned they are all quacks using microscopes as weapons.

    Ray

  • I think you are so right - but why do we have it ? I still can't get my head around it medically - what causes it ?

  • Sally,

    This is something I have spent much time on and it is difficult to grasp as it takes an in-depth knowledge in anatomy, physiology and the endocrine system.

    I can try my best to explain the basics of it but you have to grasp the extent and depth and what "Stress" actually is.

    It is not commonly known and even less thought about that there are three different types of stress.

    First, Mental stress.

    Second, Physical stress.

    Third. System stress; from things like Dehydration, Drugs, Alcohol I personally also consider things like Glyphosate Aspartame, Fluoride, EMF, including X-rays Scans Wi Fi Mobile phones, ect to be in this list, but the impact I do not consider to be in any particular order!

    Viral and Bacterial infection and sleep deprivation also cause much system stress!

    The three groups of stress have much the same effects on the body which are hormonal.

    Hormones are another one of our bodies communication systems and interact mainly through the nerve system. It is my belief that much stress over time, no matter the source of the stress causes the nerve system to go wrong and start overreacting and sometimes under reacting to these hormonal messages.

    The hormone system it's self may also be getting locked into a cycle of overreaction and giving messages to the brain through the spinal cord

    There are many hundreds of hormones and many not fully understood by anyone.

    Pain it's self is how the brain translates a signal that comes to it through the Nerve system so in a way all pain happens in the brain even tho you feel it in a foot or wherever.

    It is a bit like the old way you made a phone call before the days of a dial on the phone. Say you wanted to make a call from London to Birmingham. You turned a handle on you phone and that rang a bell in a London exchange, you then told the nice lady with all the we plugs who you would like to speak to and she then stuck your plug into the Birmingham hole. The nice lady in Birmingham answered and was told who the call was for and she stuck the plug into the hole that brought the call to another lady who was closer to the person you wanted to speak to and then stuck the plug into the hole where the house phone was. Well think of it like this one or two of these ladies is suffering at the minute and is just shoving plugs into any hole she sees, even when no one is wanting a call put through. The result is everyones telephone is ringing for no reason and people are getting very frustrated. Sad thing is the more people that shout at the lady in the exchange the more frustrated she gets and worse she gets at her job.

    The nerve system is like the telephone lines and the hormone system is like the demented lady in the exchange that no longer knows what she's doing.

    Oh Dear,, It is so difficult to try to explain,, I know now that I will have left you in confusion but hopefully you will get something out of it.

    We can only start to be a work in progress and when we stop pulling our hair out things can become more tolerable.

    It is one thing at a time.

    Just start to realise how your react to things, when you realise what you react to. See that your reaction is a habit and slowly you can stop reacting.

    So if someone or some subject always gets you worked up just start watching how you end up in agony through it! Then start saying, I am not going to react,, I am going to calm myself, I am going to keep breathing,,, I am going to consciously relax,,,,, and do it. You get much better at this but it does take a little work, and while I do not for one second think this will cure the fibro it goes toward getting in the driver seat and on top of some of the pain.

    Speaking of driver seat,,,, Driving was one of my biggies and took much work,,, I now drive very calmly and watch the world go mad as they all try and get in front of the car in front,, it's madness I tell you,, madness!

    Best Wishes, Ray.

    PS,,, I need a lie down after that!

  • Wow - what an amazing post - you have made it very clear to me and I thank you so much - so stress the main underlying factor - amazed at how it can impact the. Body and create actual symptons - it makes sense that it's slightly exaggerated signals to the brain from the nerves but Is the pain real or in my head ? It feels real and the numbness is real whe I can't feel my feet or hands - what an odd condition this is? Thank you so much foe the time you have taken Ray- so so kind X

  • Sally, the pain and and the numbness are very real!

    It is just that all pain must be translated by the brain into pain from a nerve impulse. It is a bit like a HiFi system, The needle picks up a signal and takes it through wires to the amplifier (the brain) which sends a signal back to the speakers that produce the sound (the pain)

    So all pain has to happen in the brain,, without a brain you cannot feel pain!

  • Yes - it does all make sense - thank you

  • I believe much of the numbness is about muscle tension on the nerves which are quite irritated! but his can calm,, it is one thing at a time!

  • Yes and sorry your pain will get worse so you need to make friends here and at home

  • I really do - thank you X

  • Good morning Sally 3437

    Welcome to the forum.😀 You'll find a nice kind bunch here.

    We're allll in the same boat I'm afraid. But like people in a lifeboat, sitting in different areas of the boat. We experience different things at different times.

    we all go through periods of calm and periods of panic. And we're all on the look out for help.

    On the forum we like to share things that have helped us, be that physically, mentally,emotionaly.

    most of us have found it does take quite a while to get a diagnosis, (me, at least 10 yrs) inbetween times we've kept doing our own research.

    This helps us to ;

    1, understand what is going on

    2, to have a decent conversation with our doctors.

    3, monitor our actions/emotions and body reactions.

    4, educate others (personally I love it when people say I look good . I say ' i know right! I wish I felt as good as I look, I'd rule the world!'... And other sassy remarks)

    When things get overwhelming, Sometimes that's the mind comparing life, that we used to do and that what we fight to do today. It's a grieving process for a life we thought we'd have.

    Unfortunately many of us find fighting and pushing ourselves to live the same old life increases the pain and makes us worse and decreases what we can do. On the other hand moving is good for the body, enabling happy chemicals to be made and toxic chemicals to be removed from the body.

    So we've learnt to be balanced, to start prioritising. We find pacing helps much, physically as well as emotionaly. I've enjoyed the forum as it helped me to process my grief.

    Many of us find that we have fight in a different way,eg to plan. to research and implement diary free, gluten free low sugar diets. (not as bad as you first think) (diary free got rid the dwarf sitting on my chest and the walking through treacle feeling - true story!)

    We also know that low vitamin D increases pain ( as does high sugar) low vitamin B (esp B2) decreases cognitive ability.

    Although I wish you weren't ill ( i wouldn't wish fibromyalgia on my enemy) You can get to grips with it , you can have a good and happy life.

    If you are a Christian remember Revelation 21:3,4 we're promised a time where there will be no more death, no more morning nor outcry nor pain. The former things will pass away.

    My best wishes for you

    Lydiah

  • Thank you - what a wonderful post and I really appreciate it so much - I am a veggie and verge on vegan already but I do need to take gluten out I think - I have dabbled with it in the past but need to actually do it - I swim and walk and it feels ok at the time but after I feel like death but I need to pace myself I think - I am a happy person, the loud one in a crowd but of late I am losing that part of me and it feels like a bereavement - u hit he nail on the head - thank you for this and for the time you took for me X

  • Sally,

    I often think that the loud one in the crowd is the one that would be most uncomfortable with silence. I have never been comfortable speaking to more than one person at a time as it always made me feel as tho I was acting out a part,,!

    Best Wishes, Ray

  • Funny you should say that -I am an actor and director -I like silence as much as I like company

  • Perhaps I should take up fortune telling!

  • Yes I have fibro and have had the same responses you have received several times. It's all in your head, nothing shows up in the test so you're obviously just an attention seeker making it up, then at the beginning of this year I was in so much pain I could barely move and I saw a locum Dr who was brilliant. He referred me to the pain clinic at southmead hospital and they have been so supportive and have tried to help me with the pain. Don't give up. There are some professionals who aren't patronising and belittling it just takes time to find them unfortunately ;) x

  • Thank you - I shall keep looking for one X

  • 12 yrs down the line, I can say , you learn to cope....... you make sure you keep on to your doctor for the best meds you can get for pain ........ you will hear this from all of us with FM ...... you pace yourself, do what your body tells you, don't overdue things. That's really important. If you need to rest ,go and rest and do NOT feel guilty for what you can't do, and remember tomorrow is another day, and you maybe able to do those things you can't do today !!!! All the very best Wendy

  • Your so right Iv learnt to rest now at first I couldn't I liked what you siad very kind x

  • Thank you so much - wonderful advice X

  • Hello Sally....Welcome! Well I really cannot add any further information to those who have already replied so well, but I hope you get to see a Neurologist who will confirm for you what you already know and will be able to prescribe something to help your pain....Gentle Hug xx

  • Thank you so much - such kind words X

  • As hard as it can be try to stay strong, take enjoyment from the little things in life, it's not easy, struggling to get out of bed each day, missing fun things as you know they will wear you out but spend time with friends and family, have gentle walks in pretty places, pick up a good book or get engrossed in a good movie - enjoy these small things and try to stay positive xx

  • Thank you - I really do try to be positive but it's the not knowing right now X

  • Hello Sally, I am in agreement with Trikki, I think all that can be said has been said. Sadly the prognosis for those of us with Fibro, could tell you similar stories of futility, hopelessness and lack of understanding. I often say imagination can be worse than reality, those who love and care for you can only imagine what you are feeling and we all know what an over-active imagination can be like. Those sceptics who doubt your pain will have little or no time for you, brushing you aside with words like, "pull yourself together" or "are you sure you aren't imagining it all". Many people on this site would be able to tell you of similar experiences. The sceptics will do their utmost to drag you even deeper into the pit of despair we all teeter on the edge of at one time or another. For my part, I think I would say believe in yourself, no matter how ill you feel at the time, the sun will shine again, you will have many days when you feel wonderful; then you will have days when you will want the earth to open and swallow you. Take one day at a time, don't try to rush ANYTHING. Exercise when you are able; rest and sleep when you need to. Above all, stay strong. Above everything else, don't listen to people who have only negative things to say - only you know how you feel at any given time. I truly hope that you will be one of those who search for answers - and find them. Soft, fluffy hugs, and the very best of wishes. xxx

  • Thank you sooo much - what a wonderful post - sadly only my mum and best friend actually believe me, others can't see a broken bone so think I imagine it with my other MH issues I have - I have bipolar to add to the mix. My partner gave up on me - I try to live a normal life and run a semi professional theatre company as I am a trained actor/director but can no longer work my normal day job as well as I lost it due to ill Heath so money is tight and I had to sell my flat and living off proceeds - life is good generally but just want a solid diagnosis so I can deal with this - hugs to you too bad thanks X

  • I can't imagine have Bi Polar as well as Fibro but I have a dear friend who suffers terribly from Bi Polar and know some of what he and his wife and kids have been through with it. I love drama and being part of a community drama group really helped both me and my son but it folded due to lack of volunteers so for you to continue with yours is brilliant. Keep on going and don't give up. X

  • Hi Sally,

    Welcome to the forum. Lots of great advice already here.

    Everyone is different and what works for one may not work for another. For me, I find several things important in minimising the effects of fibro.

    1. Try and be as positive as you can be and avoid any negative thinking as this seems to lead to physical symptoms and stress can bring on a flare up.

    2. Have your vitamin d checked regularly as deficiency in this seems to be common amongst fibromites and makes pain and fatigue worse.

    3. Exercise helps to minimise pain and fatigue, for me at least. There is a big BUT though. If you overdo things it will cause a setback so it's important to start slowly and build up. It's all about balance and listening to your body.

    4. If you encounter a doctor who makes light of or disbelieves your diagnosis walk away and don't see them again. Find helpful physicians.

    5. Stick around because support from fellow fibromites is a great comfort and they have a ton of info to help.

    Good luck and once again, welcome. 😃

    Annette xx

  • Thank you so much - it is a wonderful forum and already very supportive - it's the not knowing what it is but knowing you feel strange and hurt or ache - I will take all your advice and from others as the medical professionals seem to mock the condition and tell me it's in my head X

  • Hi if it is fibro it is a long road. You need to learn as much about it as possible. Hopefully you will get the right people to help you. I have had fibro for 15yrs and it has only been the last 2yrs I have been helped by the pain management at my local hospital. But even with the help I'm getting I still get confused with fibro I think everyone does. I hope you get the help you need and good luck.

  • Thank you so much - it's this feeling of waking up and knowing your body is all wrong - it's scary - I hope you are ok and I appreciate your help

  • Sally, it sounds like it could be fibromyalgia. I would definitely find a new doctor

  • The reumatologisut was horrid and laughed at me and said ' someone has been looking on the internet' when I explained my symptons - and he was a private appointment because I could not wait 6 months for NHS. He also said that it was not Neuro as u don't get pain with MS - I left there feeling so depressed - I have asked to see a Neuro out of county but has to practically beg X

  • If you are in the UK then ask your GP to refer you to your local hospital for a Pain Management course. These courses are usually run by a multi-disciplinary team which may include physiotherapist, occupational therapist, counsellor, nurse etc. They will explain everything to you and help you to learn to prioritise, plan and pace your activities. You'll get good advice about learning to manage your condition as well as you can and finding out what can be helpful and what may make it worse. If you have an unsympathetic GP, it may be worth telephoning the physiotherapy dept. at your local hospital and asking if you can self-refer on to a Pain Management programme. That's what I did and it was very helpful. The courses will usually run for a couple of hours per week over a period of 4 - 6 weeks. Sessions will include advice on coming to terms with your condition, relaxation & exercise, improving sleep, nutrition & medication.

  • Oh that is so helpful - I am seeing him today so will mention it thank you so much

  • I know only too well how you are feeling, I went through the same thing myself before being diagnosed with fibromyalgia.

    it only took about 5 months for the diagnosis and that was 7 years ago now & I too have lots of other conditions as well xx😊

  • thank you so much - it is a grim condition and people don't seem to acknowledge the impact it has on your life X

  • Yes this is your life but people with it are amazing unless you are private or anyone thinking they have it get their pm insurance first. I'm sorry some days it's even a frieght train 🚂 but here as elsewhere you will find support to cope xx

  • Thank you so much - just knowing I am not the only one helps X

  • Sally you got loads of good replys take them on board and between us all you should find things a bit easyere Keep your chin up Honey won't you x

  • Thank you so much - it's been wonderful to get such support X

  • Yes very important reserves built your energy if you have something to do conserve your energy rest when you can and look after you mind it usually what makes it worse pain can be coped with if your your typically a positive person unfortunately it's hard to stay that way so make sure you look after your head x

  • Thank you - I used to be a positive person and do practice mindfulness now but it's a hard slog xx

  • Oh bless you sorry you had to go through some rheumatologist just don't care just why be one if you can't give a correct answers.

    I had a similar experience he was rude to me just gave me medication saying it will help my moods I should see a shrink it's my depression he said come back in a month I saw his clinic assistant he was just the same wouldn't tell me what she had so frustrated I screamed at him saying I wasn't leaving until I got an answer he said musculoskeletal I said it all in my head then just left.

    I saw the physio exsplained to him who which consultant I saw he said other patients said the same thing he said speak to your GP about fibromyalgia made a appointment to see her she had ago at me well I didn't deserve that said I need a blood test come back in a week well blood tests normal great but you do have fibromyalgia it wasn't her place to tell me that consultant should she referred me to him.

    Everyone one here is very supportive they will help you with any questions you.

    Stay well Regards Hel52 🤗

  • Sally I had the same experience when I went for my first assessment by a rhumetologist. I wish I had told him how he made me feel, I am now more assertive and not afraid to say now if someone in the medical profession makes me feel small. I was diagnosed about 6 years ago and believe me fibromyalgia is worse than any other thing, and I would not wish it on my worst enemy.

  • Sounds like a story i would have wrote at the beginning off the diagnosis, Im sorry to hear you have the terrible thing , My Rheumatologist was good, he said i could walk out the room with flying colours as i had all the sore tender points

    Its not very nice and i feel for you, Its good this forum, even tho i disapear now and again, i just get that down i cant be bothered/

    Some days will be worse than others, i just except it now,

    we are all here if you need a natter

    Jane x

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