Can you tell me how you really feel?

Hi everyone ,I saw my gp last week and was told he feels I have FM as I have had blood tests and seen a rhumey,who dxd me with syjorgens syndrome and raynaulds syndrome.

As my bloods showed nothing else apart from the vitamin D def that I have been on meds for for the last year.

I have not been able to sleep properly at night for years,due to severe aches and pains that wake me constantley,I take Amitrypyiline at night with not much relief.

My go has given me Garbaptin to try but he was going to givr me pregablin I'm going to ask for pregablin as it seems to have less side effects.

What I really wanted to ask is,without meaning to offend anyone,I have always thought that FM was purely aches and pains? My daughter was dxd with severe ME 15 years ago,aged 11, back then ME was a nightmare to deal with as it seemed to be thought to be all in the mind.

I totally disagree, as my daughter suffered horrendously ,it is now thought she may all these years later that she may now have multiple sclerosis,but that is another story,bless her.

I have only read a little bit on the forum and shall take my time to read lots more,but please can you give me your experiences of what FM really does to the body? Thank you so much in advance.Sandy.

11 Replies

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  • Hi

    its hard to tell you as every one will be differient, this is mine

    so very stiff in the morning worse

    so tired but cant sleep

    pain just about every place on my body

    feelings of, now this is hard to explain its like something is moving on the nerves

    of my body I dont know how to explain this its just the worst feeling in my arms and legs.

    cant keep still

    lots of twitching its like that feeling you get just before you go to sleep and you think

    you have fallen over.

    pain in my neck and head, some times headaches.

    forgetting what I was going to say, not getting the right word and saying some thing

    differient, finding I have put things away in the wrong places.

    not being able to take part in a conversation as I forget what I was going to say or

    else what comes out of my mouth is rubbish.

    not being able to walk far

    Lots of strange pain like stabbing pain in my knees, and other places

    having no energy to do any thing

    my eyes seem to have changed I dont think I see as well

    I dont like any one to touch me as it feels sore every where dont like any noise

    getting a flare makes me cry, my doctor says its depression I

    just think its the pain and getting fed up with it always being there

    i get a lot of sore throats.

    I think I could go on I am lucky as its my only complaint.

    so this is a night I cant sleep sat downstairs and its about 12

    been to bed and had to get up again the pain and I was never

    going to sleep

    viv

  • Hey Sandy. :)

    Sorry to hear you've been suffering so much recently. :(

    Listening to what you say it sounds like you could have Fibromyaglia. But other things needed to be ruled out to know for definate. You say most of your tests have come back clear though, which is what usually happens prior getting a diagnosis for FS. Diagnosis entails a bodily examination involving a 'trigger point' test. Certain parts of body will be gently pressed to see if there is pain or a reaction. People who are healthy will not experiance pain or react to the pressure but people who suffer with FS have increased sensitivity and will. Those with the condition are generally more sensitive to stimuli as well, such as light, nose, and well as emotional matters. People are also more susceptible to depression and anxiety - although it is not confirmed if this is a symptom in itself or an emotional reaction to the condition - either way its a common feature. Sleep is a common problem in Fibromyaglia. As is general fatigue, which is made worse by sleep deprivation but also a symptom in itself.

    Pain is widespead, and experianced in all kinds of ways: general aches, burning, stabbing and throbbing. Sharp or dull. The pains can be sudden and unexpected, or they can come on slowly and get worse. Before I was diagnosed, I often woke up with general stiffness throughout - it felt alot like I'd been twisted and pulled. I know lots of people experinace sitff, tight muscles, and have problems with coordination.

    Okay what else.. I'm struggling here because. Well first of all its late and I'm having trouble sleeping, so I'm getting tired and losing my way. Additionally, it could be due to Fog. I have a terrible time of it. Not being able to think things through easily, forgetting things, struggling to finish sentances, not being able to find the right word. Just general confusion in itself about the time of day or what you were talking about. Its very frustrating. This confusion can also come out in speech. 'e.g. I'm feak and weeble' (although the phrase is actually 'weak and feeble') getting the first letters off words the wrong way round I know is common. In terms I also remember thinking that my speech didn't sound as articulate as it used to, when I was healthy. Slowed speech is a symptom. I also find myself bumping into things more and losing my balance- oh and dizzyness too. Sometimes I would nearly find myself just falling over unprovoked. This also links to headaches, and commonly for me, jaw pain.

    I know that some people experiance quite severe IBS, as well as general indigestion, and dry mouth. I've also heard that skin irritation and dry eye is a symptom, and restless leg syndrome. As well as just a general feeling of being ill.

    I think thats pretty much everything- I hope this helps. And I hope you get answers soon. When I was doing my research before I was properly diagnosed, I found the NHS Choices website really useful. Just type 'Fibromylagia' into the search term, or look it up on the A-Z Fibromyalgia and you should fine whatever you're looking for there.

    I also hope your daughters okay. Take care and Gentle Hugs, Fay xxxxxxx

  • Click on the link below for Fibromyalgia symptoms -

    bupa.co.uk/individuals/heal...

    More info on Fibromyalgia -

    patient.co.uk/health/Fibrom...

  • How do I really feel? Bloody awful! I really don't know what is Fibro and what is my other conditions so I doubt if my list of symptoms would be that helpful to you. But a break from them would be amazing and greatly appreciated.

    ((((((Gentle Hugs))))))

    Julie xx

  • How I really feel well it can change day by day. Today I am experiencing terrible pains in my hands and pins and needles all way up left arm into shoulder. My hips and knees are grim and then down to my feet well left is very swollen and joints sore to move. So basically it varies day to day it could be lower back legs and neck or neck shoulders upper back. Every day is different I crawl out of bed about 3.30 in the morning and it takes till about 8.00am to begin to feel a bit better when the medicines kick in. Lunch time may feel ok sounds rather like a list of twines sorry. I firmly believe you should try and smile and laugh at something it makes you feel better. Some days that does not work hey ho good luck x gins

  • How do I feel ..... After 22 years with fibro ... Truthfully .... Suicidal .... Most drugs make me feel worse and have BAD side effects but no meds make me seize up with muscle spasms in my shoulders and neck so bad it brings on migraines I can't function. Had to give up every activity I love until the drs find a med I can tolerate. Can't drive feel useless as a wife and mother and if I didn't have a family if it was just me alone I would have ended it all 4 years ago.

  • Hi everyone,I just wanted to say,I can TOTALLY agree with all of the above ,I felt a bit of a fake when I was at my g.p, mainly because I had had the blood tests,seen rhumey,who at the time consentrated more on my raynaulds and syjorgens symptoms.

    I don't feel like a winge,now knowing that it isn't just me.

    My old g.p recently retired,shame as he was great.

    I find my worst problems are the waking constantley with the hip,back and hands,also the numbness in my hands at night,drives me mad.

    Then as people have said,the brain fog,I feel for me ,is because I don't feel refreshed from having such a rubbish sleep.

    I need to feel awake in the morning as I look after my 3 year old twin grandaughters while my daughter works full time ,It's school holiday from the nursery they go to 3 mornings a week,so I will be shattered later,ha ha!

    They keep me smileing,when I had breast cancer two years ago,I still looked after them whilst going through most of my treatments,they made my days so much happier,less time to worry about what was going to happen next.

    Thank you again everyone.

    Sandy.

  • Hi everyone,I just wanted to say,I can TOTALLY agree with all of the above ,I felt a bit of a fake when I was at my g.p, mainly because I had had the blood tests,seen rhumey,who at the time consentrated more on my raynaulds and syjorgens symptoms.

    I don't feel like a winge,now knowing that it isn't just me.

    My old g.p recently retired,shame as he was great.

    I find my worst problems are the waking constantley with the hip,back and hands,also the numbness in my hands at night,drives me mad.

    Then as people have said,the brain fog,I feel for me ,is because I don't feel refreshed from having such a rubbish sleep.

    I need to feel awake in the morning as I look after my 3 year old twin grandaughters while my daughter works full time ,It's school holiday from the nursery they go to 3 mornings a week,so I will be shattered later,ha ha!

    They keep me smileing,when I had breast cancer two years ago,I still looked after them whilst going through most of my treatments,they made my days so much happier,less time to worry about what was going to happen next.

    Thank you again everyone.

    Sandy.

  • All of the above!!! I'm having a really good phase at the moment after about 8 years of total suffering and feeling like I was going mad. I had a very stressful job for 3 years and then decided one day enough is enough and took a year out- the difference was almost overnight and I have continued to do well since. I'm now back again work full time but not in a management role.

    My symptoms chronic dragging aching pains, a tiredness that just cannot be described, feeling sick, stomach problems, headaches, sharp pains everywhere, flu like symptoms, weight gain, achy knees, sore feet, pain down my legs to the tip of my toes, restless legs total brain fog. Not exactly a wish list!!

    Take care

    Jax x :)

  • Thanks jax,I agree with all your symptoms,at least now I know it isn't just me being a winge ,I have to agree about the stressful management job being bad for your health..my daughter works in management and the stress plays havoc with her health issues,shame,she loves her job,but the stress is bad for her.

    Hope you continue to improve ,take care Sandy.

  • The most helpful thing about this forum is that we all know how each other feels. We all understand the symptoms and the intensity of the pain and the aggravation and exhaustion of the fatigue. There are so many symptoms, we all have different levels of symptoms, but we all understand. :)

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