1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

personal experiences with fibro and how it effects you

Posted , 4 users are following.

derek1979
derek1979

this is a discussion for those who dont understand fibromyalgia where those who have had it for years can post there personal experences bad or good ect and to post advice and tips to help those get a better understanding about the condition and to help come to turms with it

3 likes, 12 replies

12 Replies

  • kaz_40
    kaz_40 derek1979

    Posted

    Hi Derek Fibromyalgia is based on pain their are 100 symptoms you can have at one given time. The person that normally diagnoses fibro is a rheumatologist. we have 18 pressure points on different parts of our body. Fibro is normally diagnosed after other conditions have been ruled out. List of symptoms that I have had since having fibro. fibro fog, widespread pain all over body, blured vision, tinnitus earache,difficulty sleeping,muscle stiffness, poor concentration, short term memory loss,IBS, numbness, tingling,sensitive to light and sound,,headaches, temprature sensitivity, difficulty swollowing,depression,hair loss weight gain,poor balance,shortness of breath,muscle twitches,swelling in hands feet. costochondritis. , Allodynia pain wearing clothing. These are the symptoms I have personally experienced . I have poor mobility I have to use a walking frame walking stick wheelchair. I also have different aids bath board commodes perching stool. I am unable to take pain meds due to the bad side affects ive had. dr has since said I am allergic to opoids. I use hot waterbottles and wheat bags.when I 1st diagnosed I was angry went into denial I grieved for the person I was, then came acceptance after a year of having fibro. how I handle it is by taking each day as it comes trying to pace myself, keep my mind foccussed on other things and not the fibro.Fibro has been that bad that I have had to have carers in taking care of me.I am at the extreme level of fibro. fibro waxes wanes it affects people differently in the severity of it. their is no cure. pain meds are given out by your gp you are normally offered CBT and can also be refered to apain clinic. some health care services sometimes off free acupunture for 12 weeks and hydrotherepy.Stressing worrying makes our pain worse..
  • amybober5982
    amybober5982 derek1979

    Posted

    I have only been told I have fibro for about a month an a half now an I am having a hard time believing it, some of my symptoms match but others don't.

    I do not have trouble sleeping I have always been a tired person an I could sleep for hours if my life style would let me. I do have some of the tender points, migraines, I have had the chest pain related to fibro, I have random muscle twitches all over, depression, anxiety an most of all my legs. For the past 21 days I had numbness in my left foot leg fatigue burning thighs an muscle cramp in my thigh. The numbness is finally starting to fade but both legs just ache an feel so tired an the muscles in calves are sore an tight. I have pain but it's not severe. So does this sound like fibro to you. I also get tender breast at times an a earache of an on in the left Ear.

    • kaz_40
      kaz_40 amybober5982

      Posted

      Hi Amy the symptoms you have described are definitly fibro symptoms. when you are 1st diagnosed with fibro. you go through different emotions.These are denial, anger grieving for the person you once were. Then comes acceptance for how you now are, it took me to finally accept and come to terms with the person I am now. you are in the denial stage. I did reply to derek and put alist of different symptoms on but its being moderated for some eason goodness knows why. I also get very tender breasts earache and tinitus. chin up sweet heart I know its hard. here for you take care smile 
    • amybober5982
      amybober5982 kaz_40

      Posted

      Well that really helps hearing it from someone else that actually has fibro.

      I guess I'm in just such a denial because I don't have a problem sleeping like I said I could sleep for days if my kids would let me an I'm not in constant pain. I do have pain but not always an it's bothersome but I can push through it. I have more cramps an achy pains an burning pains rather than throbbing. My muscle do get fatigued very easy, everyday it's something. an it's most affects one side to were I read it has to be in four quads. I don't comprehend things well because I'm a worrier so I'm always asking someone to dummy it down for me I think that's why I ask so many questions. So would you still say this is defiantly fibro to you. Thanks for responding it rely helps.

    • kaz_40
      kaz_40 amybober5982

      Posted

      From what youve said to me it sounds very much like fibro to me. fibro varies from person to person in the severity of it. some people may not have it too bad others can have it where its very extreme. our symprtoms vary on how long they last 1 person may have fibro fog for a day another person could have it for a week. fibro changes from day today. you may get up 1 day not be in too much the next day your in so much you cant get out of bed.We all differ on pain meds what suits 1 person may not suit another. its trial error on alot of things as to what suits us and what doesnt, and what works for us and what doesnt. someone may have accupunture and it works fine for them another person it may not work for.them. I cant take meds so just use hot waterbottles battle through the pain as best I can. anything your un sure about is always worth checking out with your dr.. These are some of the symptoms I have had since having fibro. fibro fog, sensitive light , sound, sensitivity clothing, PAIN all over the body, muscel stiffness, muscel twitches,poor balance. earache tinnitus,fatique,difficulty sleeping, short term memory loss, headaches, migrains, shortness of breath, numbness tingling burning sensation, IBS, depression,swelling in hands feet fingers.Jaw stiffness difficulty swollowing blured vision temprature sensitivity hair loss weight gain or loss. These are what Ive experienced so far and their are many more take care gentle hug 
    • derek1979
      derek1979 amybober5982

      Posted

      have you been told its fibro by a rhuematologist as if so then it must be cause it sounds like it to me the chest pain is more likely to be costocondritis and i will post you some info on that as i have that to and you could do with gaining some knowledge on that subject so this has come from an nhs site.

      costocondritis

      Costochondritis is the medical term for inflammation of the cartilage that joins your ribs to your breastbone (sternum).

      Cartilage is tough but flexible connective tissue found throughout the body, including in the joints between bones. It acts as a shock absorber, cushioning the joints.

      The area of cartilage joining your ribs to your breastbone is known as the costochondral joint.

      Costochondritis and Tietze’s syndrome

      Costochondritis can sometimes be confused with a separate condition called Tietze’s syndrome, as it also involves inflammation of the costochondral joint and can cause very similar symptoms.

      However, Tietze’s syndrome is much less common than costochondritis, and it tends to cause chest swelling in addition to the other symptoms, whereas costochondritis does not.

      The rest of this topic focuses on costochondritis but, as the conditions are very similar, most of the information also applies to Tietze’s syndrome.

      Signs and symptoms

      When the costochondral joint becomes inflamed, it can result in sharp chest pain and tenderness.

      The pain may be made worse by:

      a particular posture, such as lying down

      pressure on your chest, such as wearing a seatbelt or hugging someone

      deep breathing, coughing and sneezing

      physical activity

      In cases of Tietze’s syndrome, there may also be some swelling.

      These symptoms can develop gradually or start suddenly.

      When to seek medical help

      It can be difficult to tell the difference between the chest pain associated with costochondritis and pain caused by more serious conditions, such as a heart attack.

      However, a heart attack usually causes more widespread pain and additional symptoms, such as breathlessness, nausea and sweating.

      If you, or someone you are with, experiences sudden chest pain and you think there is a possibility it could be a heart attack, dial 999 immediately and ask for an ambulance.

      If you have had chest pain for a while, don't ignore it. Make an appointment to see your GP so they can investigate the cause.

      What causes costochondritis?

      Inflammation is the body’s natural response to infection, irritation or injury. It is not known exactly why the costochondral joint becomes inflamed, but in some cases it has been linked to:

      severe coughing, which strains your chest area

      an injury to your chest

      physical strain from repeated exercise or sudden exertion that you are not accustomed to, such as moving furniture

      an infection – including respiratory tract infections (RTIs) and wound infections

      wear and tear – your chest moves in and out 20 to 30 times a minute, and this motion can, over time, lead to discomfort in these joints

      Costochondritis tends to be more common in adults over 40 years of age, whereas Tietze’s syndrome usually affect young adults under 40.

      Diagnosing costochondritis

      If you have symptoms of costochondritis, your GP will carry out a physical examination by looking at and touching the upper chest area around your costochondral joint. They will ask you when and where your pain occurs, and look at your recent medical history.

      Before a diagnosis can be confirmed, some tests may need to be carried out to rule out other possible causes of your chest pain. These may include:

      an electrocardiogram (ECG), which records the rhythms and electrical activity of your heart

      a blood test to check for signs of underlying inflammation

      a chest X-ray

      If no other condition is suspected or found, a diagnosis of costochondritis may be made. Tietze's syndrome may be diagnosed if you have swelling in your chest, in addition to your other symptoms.

      Treating costochondritis

      Costochondritis often gets better after a few weeks, but self-help measures and medication can manage the symptoms.

      Self-help

      Costochondritis can be aggravated by any activity that places stress on your chest area, such as strenuous exercise, or even simple movements like reaching up to a high cupboard.

      Any activity that makes the pain in your chest area worse should be avoided until the inflammation in your ribs and cartilage has improved.

      You may also find it soothing to regularly apply heat to the painful area – for example, using a cloth or flannel that has been warmed with hot water.

      Painkillers

      Painkillers, such as paracetamol can be used to ease mild to moderate pain.

      Taking a type of medication called a non-steroidal anti-inflammatory drug (NSAID) - such as ibuprofen and naproxen – two or three times a day can also help control the pain and swelling. Aspirin, another type of NSAID, is also a suitable alternative.

      These medications are available from pharmacies without a prescription, but you should make sure you carefully read the instructions that come with them before use.

      NSAIDs are not suitable for people with certain health conditions, including asthma, stomach ulcers, high blood pressure, or kidney or heart problems. Children under 16 should not take aspirin.

      Contact your GP if your symptoms get worse despite resting and taking painkillers, as you may benefit from treatment with corticosteroids. 

      Corticosteroid injections

      Corticosteroids are powerful medicines that can help to reduce pain and swelling. They can be injected into and around your costochondral joint to help relieve the symptoms of costochondritis.

      Corticosteroid injections may be recommended if your pain is severe, or if NSAIDs are unsuitable or ineffective. They may be given by your GP, or you may need to be referred to a specialist called a rheumatologist.

      Having too many corticosteroid injections can damage your costochondral joint, so you may only be able to have this type of treatment once every few months if you continue to experience pain.

      Outlook

      Costochondritis can improve on its own after a few weeks, although it sometimes last for several months or more.

      The condition is not life-threatening and does not lead to any permanent problems.

      In cases of Tietze's syndrome, you may still have some swelling after the pain and tenderness have gone.

      Costochondritis can cause chest pain and tenderness 

      fibromyalgia

      Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

      As well as widespread pain, people with fibromyalgia may also have:

      increased sensitivity to pain

      fatigue (extreme tiredness)

      muscle stiffness

      difficulty sleeping

      problems with mental processes (known as "fibro-fog") – such as problems with memory and concentration

      headaches

      irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating

      If you think you have fibromyalgia, visit your GP. Treatment is available to ease some of its symptoms, although they are unlikely to disappear completely.

      Read more about the symptoms of fibromyalgia.

      What causes fibromyalgia?

      The exact cause of fibromyalgia is unknown, but it's thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.

      It's also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents.

      In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:

      an injury or infection

      giving birth

      having an operation

      the breakdown of a relationship 

      the death of a loved one

      Read more about the causes of fibromyalgia.

      Who is affected?

      Anyone can develop fibromyalgia, although it affects around seven times as many women as men. The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly.

      It's not clear exactly how many people are affected by fibromyalgia, although research has suggested that it could be a relatively common condition. Some estimates suggest nearly 1 in 20 people may be affected by fibromyalgia to some degree.

      One of the main reasons it's not clear how many people are affected is because fibromyalgia can be a difficult condition to diagnose. There is no specific test for the condition, and the symptoms can be similar to a number of other conditions.

      Read more about diagnosing fibromyalgia.

      How fibromyalgia is treated

      There is currently no cure for fibromyalgia, but there are treatments to help relieve some of the symptoms and make the condition easier to live with.

      Treatment tends to be a combination of:

      medication – such as antidepressants and painkillers

      talking therapies – such as cognitive behavioural therapy (CBT) andcounselling

      lifestyle changes – such as exercise programmes and relaxation techniques

      Exercise in particular has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain.

      Read more about treating fibromyalgia and advice on self-help for fibromyalgia.

      Support groups

      Many people with fibromyalgia find that support groups provide an important network where they can talk to others living with the condition.

      FibroAction is a charity that offers information and support to people with fibromyalgia. If you have any questions about fibromyalgia, call the charity's helpline on 0844 443 5422.

      There is also a network of local FibroAction support groups you may find helpful and a FibroAction online community, where you can find out about news, events and ongoing research into the condition.

      Other useful support groups are Fibromyalgia Association UK and UK Fibromyalgia.

      hope this has been of some use to you and to any one else and this is genuin info from an nhs uk site

  • shelagh6
    shelagh6 derek1979

    Posted

    It is difficult to know what is Fibro and what is one of the other conditions I and several others have. I was diagnosed about 24yrs ago by a Rheumatoligist I'd been sent to for pain. At the time I'd never heard of it, the Dr called a nurse into the room and told her to give me a leaflet on fibromyalgia. That was the end of my treatment by Dr Halsey, I was sent back to my dr who referred me to a pain consultant there I had acupuncture and was loaned a TENS machine. After six visits I was sent back to my dr again and referred to a Neurologist because doc thought I might have MS. The Neurologist was a horrible little man, I won't go into details. How it affects me now, pain, occasional weakness down one side or the other or both. Memory loss, losing words for simple things, forgetting where things are, what I was doing etc. loss of balance but not in the usual way, it's a bit like being drunk but I don't drink! Irritable bowel syndrome, numbness, loss of sensation. Sleep problems, most of all pain, often horrendous pain, stabbing pain, cramping pain aching constant pain, lots and lots of indescribable pain! I'm sure I've missed something, brain fog!

    I had hoped it would all have gone away by now but looks like I'm stuck with it.

    what about you, how does it affect you?

    • derek1979
      derek1979 shelagh6

      Posted

      severe pain in my arms,legs,back,sholders plus pins and needles all down both arms headaches,loss of memory,balance issues cant walk without a stick as i fall over but cant walk to far as getting to the loo is to exhausting and its embarrassing as i sometimes wet my self as i cant make it to the loo i also have joint stiffness and strugle to use my hands and also pass out with the pain but thats when it gets very unbearable the pain makes me cry as its so intense and i feel like such a burden to my wife there are other symptoms but instead of listing them all i will say you would have heard of them anyway from others and i to hoped it would go years ago as i have had it for 26 years but only recently got the diagnosis and its progressive as if it did not hurt enough as it is its not going anywhere its here to stay but for me the worst thing is when i was a young child a lady who used to look after my father she was a foster mother or hes adopted mother im not sure but she used to abuse me and my brother and it stopped when i was about 5 and at 6 i broke my ankle but still to this day no one knows how that happened then at ten all the pain came and now cause of memory loss i cant remember all the goods times i had as a child but also mainly cause of the abuse but im proud of my self cause i protected my brother and that sick women is gone now she past away years ago so you could say all my life has been pain and suffering till i met my wife and had my son ive never spoken about the abuse it was like this my mum used to take me and my brother to see my dad at that womens house and my dad would play with my brother while she took my clothes off and put me in the bath and put bruises on me and hold me under the water for a few seconds and touch me in places that i did not like she said it wont stop unless you tell your mum your step dad was hitting you she did the same to my brother and my dad never knew or suspected anything she tried to get me and my brother taken off my mum buy social services but they did nothing i never really got help for those issues as i protected my brother and in 1998 i became depressed but then i got help and in 2002 the pain got so unbearable i could not work again but then i met my wife on may 15th 2011 at 15:40 p.m and them we decided to move in togther we did that from the start of our relationship and then we had our son and from the day i met my wife it was like i had been born again and the past did not matter anymore but ive lost so many good past childhood memorys and thats how horrible life was to me from when i was 3 up till the diagnosis but im greatfull for having my wife and my son and im not the worst case out there but i do understand all to well how physical and sexual abuse effects people and all the bad emotions on top fibro its a nightmare come reality and i have never spoke of this to anyone but social services several years ago but i wanted to get it off my chest cause ive bottled it up for many years and fibro has kind of gotten in the way of that so theres another symptom for you with memory loss also come blocking bad past issues that should be sorted not left to get worse so thanks for listening and now everyone can see how my life has been but i have my wife and son now and thats worth going through all that just to have them
    • shelagh6
      shelagh6 derek1979

      Posted

      Derek, from what you've told us and my experience as a Counsellor I strongly suggest you speak to your GP about Counselling. I believe Person Centered Counselling would do you the world of good, your doctor can refer you for that. What I have learned from experience is that people hang on to things, letting it all out on here is great but you would benefit from some direction. Counselling may even help with your fibro symptoms.

      all the best, have a comfortable day x

    • derek1979
      derek1979 shelagh6

      Posted

      yhonestly its fine i have had treatment and counciling for that and im ok with it and after years of not seeing my dad im back in touch with him and alls good there for me it was about just letting people know how hard life was for me and no matter how thougfh things was in the past you can still have a good future and to let people know that if similar things has happened to anyone else then its ok to speak about it and do something about it cause with fibro i have found out by researching that even though no 1 knows the exact cause it can still be secondry to past trauma but im still discussing things with the psychologist as even though he said to me on the phone its not an issue now its good to revisit it just to realise how brave i was and like he said if i was brave back then i can be brave with fibro and use some of my past strength on dealing with fibro and i could not agree more but thanks for the advice and thats why i told you cause you know what your talking about there so thanks again
  • derek1979
    derek1979

    Posted

    guys im ok with sharing the post i put on here about my past it helps me let it go so dont worry im fine with it and i guess fibro can get in the way of lettings things like that go but hope you all understand how hard things have been for me and hope no one else has gone through it or if someone has i hope it helps that person to speak up on it and it ok to do so but you see for me its a nightmare come true as all i have had in life is pain but at least i have my wife and son and good friends like you all anyway im off to bed now sweet dreams to all xx
  • Plzhelpnikki
    Plzhelpnikki derek1979

    Posted

    Hi everyone. I've never been on something like this before. I need to be able to talk about what I am experiencing and know what it lik . My girl friend doesn't get it. Ok sport for babbling on. Lately for almost 5 months have I been feeling what at what I though muscle pain i. Mainly my shoulders. It quickly progressed to my neck joints greats side .I feel like I can't move right. I'm very stiff roboti . Almost. Some days are awful. Its literally pain from head and neck to abdomen arms knees and feet. My legs this week stated sweeping bad and turning reddish purple. I've been to many places no one had helped. I think it best fits fibro myalgia. I have to know did any one else get very confused at times and or crazy mood changes. What can I do to stop the pain a little bit. And does stress really make it worse. Cause if it does I know why its got this bad I Hurst head to toe my shoulder knees angles and emboss and wrist pop when I love them. Please help m . I feel so alone no one understands how hard this i . They think cause you are tough and fight through it you are not in pain. IMG. Sorry again for rambling. That you for your time if you do decide to read it. I appreciate it

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.