Fybromyallgia?

woodbine
woodbine Member Posts: 140
edited 13. Sep 2010, 09:02 in Living with Arthritis archive
(Have I spelled that right - I hope so!)

I was wondering if any of you out there can help me with this question - you always seem to have such a lot of experience between you :)

I have multi-joint OA (back, hands, knees), but also a number of tender points not directly on joints - for example, at the front of both shoulders, on both sides of the back of my neck, on some parts of my rib cage (both front and back), and have recently started feeling pain and tenderness on the inside of both elbows. All these points are painful to anything more than the gentlest touch, and the elbows hurt badly if I lift anything heavier than a pen.

My GP commented that it seems a bit like fibromyalgia, except that this is always accompanied with fatigue and 'fogginess'. Although I feel unexpectedly tired sometimes I usually put it down to the pain. I don't get the fogginess bit either - at least, no more than we all do sometimes :lol:

Has anyone got any ideas or thoughts about this, please, or experience of similar tender spots?

Any help/thoughts greatly appreciated - hurting in so many places, even though not in agony in any one place, really gets me down, as I know many of you are unfortunate enough to understand :(:)

Thanks
Naomi

Comments

  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Naomi

    I am sorry you are feeling unwell. I have read that with fibro one does not have to get the "fogginess" necessarily. Symptoms are different depending upon the person, but one common symptom is that you ache all over with the pain sometimes being mild and others times really bad that it is practically unbearable.

    Do you suffer from headaches or have flu-like symptoms? There are 18 tender points if I remember rightly.

    I think it may be a good idea if you call the Helpline tomorrow and have a chat with them or if you prefer post about it on the Helpline zone on the forum.

    Sorry I cannot be of more help but I wished to reply to your posting.

    Look after yourself,

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • barbara12
    barbara12 Member Posts: 21,091
    edited 30. Nov -1, 00:00
    Hi Naomi
    Sorry I cant had much more to what Elna has said, apart from your gp may have to refer you to a rheumy, they do all the test for fibro.
    I do hope you feel better very soon.
    Love
    Barbara xx
    Love
    Barbara
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi I once worked with someone who had fibro, pain was her symptom, with a fair bit ot tiredness. Of course, I don't know how she felt but she managed to cope without giveing her co-workers (us) any sign of the 'foginess', although it may well have been their.

    Like a lot of things I think some suffer more from some parts of the disease than others. I'd do what people suggest and talk to the helpline here, sometimes fibro and other forms of arthritis are present at the same time.

    Love Sue
  • annie_mial
    annie_mial Member Posts: 5,818
    edited 30. Nov -1, 00:00
    I'm query fibro right now and I think when I see the Rheumy next (about 8 weeks I think) he will confirm it.

    I get the pain - sore to touch all over, which turns into an extreme ache - and I get the tiredness, but have never felt any 'foggier' than usual.

    I'm currently on a very small dose of Amytriptyline which does seem to be helping a bit with the pain.

    Perhaps you could get your GP to refer you?

    Annie
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Hi Naomi

    So sorry to hear of your pain.

    I am diagnosed with SLE (a form of Lupus) and PolyArthritis and therefore have read lots of books researching it all.
    In my books Fibromyalgia is mentioned alot as symptoms can mimic. I remember a book saying that corticosteroids can worsen Fibro symptoms although for the first few weeks you may feel better but then it worsens. I don't know what meds you are on but thought it worth mentioning just incase.
    Important thing to bear in mind is that if it is Fibro you have it is not life threatening and not crippling (although I know pain feels crippling!) It looks like there are lots of medication options for Bibromyalgia with the majority of people responding positively. Also things like moist heat, coolant sprays and gentle massage.
    I'm not much help but hopefully you will meet with a specialist very soon to conduct tests and receive good professional advice.
    Sending positive healing thoughts.
    Carol :lol:
  • dippydoodah
    dippydoodah Member Posts: 350
    edited 30. Nov -1, 00:00
    this is a topic that interests me also and ive been having exactly the same symptoms. as i understand, its common to have symptoms in the four quadrons (?) of your body, which i have. pains in the neck, shoulders, elbows, back, buttocks :oops: legs ribs and hips... not always joint pain. i have terrible muscle pain in my arms back and neck and above my knees and i suffer from terrible fatigue, nausia and dizziness but as i am no doctor, it is something that i am going to ask my rheumatologist when i see him next month.

    sounds silly put part of me is hoping it is something like fibro, as maybe that would explain my weight gain. im on thyroxine and have been controlling my diet so much so a nutritionist would be proud but i still putting weight on... i understand fibro can effect the metabolism??

    will let you know how i get on and would be interested to see other respohnses.

    caroline x
  • angie1973
    angie1973 Member Posts: 248
    edited 30. Nov -1, 00:00
    I'd ask for more confirmation if I were you.

    I have Fibromyalgia as well as OA.

    My main symptom was pain and fatigue, but it's amazing how long it took me to get an official diagnosis because they didn't piece together the symptoms and associated conditions very well.

    To be correctly diagnosed with Fibromyalgia they expect you to have at least 11 out of the 18 tender spots (if you search for tender spots, there is usually a map of the body showing where they are), although this tender spot analysis isn't always used to diagnose, it depends on the doctor.

    Pain needs to be in all four quadrants of the body and needs to have existed for over 3 months.

    Fatigue also plays a big part in symptoms so unlike Chronic Fatigue (which some say is the same as Fibromyalgia), the pain is worse than the sleep problems, and in CFS the sleep problems override everything else along with a feeling like you have a heavy cold during a flare).

    Other symptoms associated with Fibro are:

    Restless Legs Syndrome
    Headaches
    Irritable Bowel Syndrome
    TMJ (Jaw problems)
    Carpel Tunnel
    Short Term memory problems

    The list goes on, but these are the main ones.

    I have all of those minus the jaw issues, but because I only ever went with one at a time, they didn't pick up on it until last year. I finally had had enough of being in pain 24/7 and the headaches and sleep issues I had too (only took 8 years - sigh!!).

    Because my pains were not just joint (I had this too which I now know to be OA), I had muscular pains as well, all over my body, and that pain moved around too, so it's was able to be distinguished from OA.

    I'd certainly ask to be referred if you feel you may have it. I wouldn't wish it on my worst enemy or arthritis for that matter.

    I hope you get a firm diagnosis one way or the other soon.

    Take Care.....
    _______________________

    Only 99.9% possessed by the giggle monster.........the other 0.01 % just eats chocolate..
  • nordman
    nordman Member Posts: 6
    edited 30. Nov -1, 00:00
    woodbine wrote:
    (Have I spelled that right - I hope so!)

    I was wondering if any of you out there can help me with this question - you always seem to have such a lot of experience between you :)

    I have multi-joint OA (back, hands, knees), but also a number of tender points not directly on joints - for example, at the front of both shoulders, on both sides of the back of my neck, on some parts of my rib cage (both front and back), and have recently started feeling pain and tenderness on the inside of both elbows. All these points are painful to anything more than the gentlest touch, and the elbows hurt badly if I lift anything heavier than a pen.

    My GP commented that it seems a bit like fibromyalgia, except that this is always accompanied with fatigue and 'fogginess'. Although I feel unexpectedly tired sometimes I usually put it down to the pain. I don't get the fogginess bit either - at least, no more than we all do sometimes :lol:

    Has anyone got any ideas or thoughts about this, please, or experience of similar tender spots?

    Any help/thoughts greatly appreciated - hurting in so many places, even though not in agony in any one place, really gets me down, as I know many of you are unfortunate enough to understand :(:)

    Thanks
    Naomi
    Hi my name is Bobby.I have fibromyalgia, a complex illness and endless amount of symptom that it cause me is very exhausting and devastating.
    Fibromyalgia cause me extensive pain and fatigue and i feel that i have no power in my body. I feel that my arms and legs are tied to something very heavy, and i haven't no strength to move forward.
    My Bowel is irritated, which cause me constipation, diarrhoea, regular stomach pain and gas and i feel that i have to urinate very often. To visit the toilet frequently when i am so exhausted and have muscles pain and weakness, make my condition worse. Stiffness effects many parts of my body, especially in the morning or after sitting or standing in one position. If i don`t change my position very often, the stiffness and pain getting worse.
    Pain is often followed by muscle spasm and becoming more severe in parts of my body that i use, my legs and back. I have constant headache which is very stressful and devastating. I have an uncomfortable sensation in my legs, Its feel like something running or moving in my legs. I can have the symptom all day, but usually when i am sleeping or resting and sitting in the same position. I have an irresistible need to move my legs for relief of the horrible and uncomfortable feelings. It disrupt my sleep, make me more exhausted, causing me to wake up suddenly, and also make it difficult for me to sit comfortably anywhere, in a sofa, in a chair, in a car. sometimes i have cramps and muscle twitching which are very painful.
    I have problems falling asleep or staying asleep and if I sleep i wake up in the morning feeling exhausted. I have balance problems, difficulty concentrating, forgetting thing and have poor memory. I also cannot stand odours and loud noises, they cause me irritation, headache and dizziness that i will smack my head into the wall.
    I feel constantly numbness or tingling in my hands, feet and arms. I am clumsy, Handgrip is poor and i can`t help it to dropping and breaking things. Muscles weakness, fatigue, Pain and discomfort considerably limit my ability doing things It's very painful to touch many part of my body. I don`t like anybody to hug me or have an arm around my shoulder. Even hand shake is painful. I feel severe pain when somebody help me washing my shoulders and back, it feels like that the person scratching my back and the pain feels deeply inside.
    To be diagnosed fibromyalgia you should be referd to pain managment clinic
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Oooooh nordman, that sounds like a lot to cope with and you reflect many of the classic symptoms that others have mentioned, the restless legs, tiredness, tenderness etc. Can they give one any meds for fibro, or does one just have to struggle on? Have you been referred to a pain clinic - they don't exist any more in my neck of the woods! I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • woodbine
    woodbine Member Posts: 140
    edited 30. Nov -1, 00:00
    Thanks for all your suggestions and sympathy. I have now seen my GP - he agrees that the pain in my elbows is probably soft-tissue related, rather than directly down to my OA, but is sending me for an xray in case the bones/joint are to blame. If the joint sems fine, I'll probably ask him about fibro again.
    I asked him why both elbows should have become painful at the same time, and he didn't seem to have much of an answer, except that I should wait until the results of the xray are ready, and discuss it again. He's also said that he may give me an injection into the soft tissue of the elbow to se if this helps - he hasn't given me more details of this yet.

    I do have some of the other symptoms of fibro - particularly the restless legs and easy bruising. I told the GP I was also having problems getting to sleep, and he's given me some different painkillers (co-dydramol) in case it's the aches that are keeping me awake. He also says that as restless legs seem to run strongly in my family (as well as OA) it might be down to something genetic, not fibro. (Can fibro be genetic, I wonder?)

    Anyway - thanks again :)

    Naomi
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Hi Naomi :D

    glad you've seen the doc and that he has taken your symptoms seriously and investigating the elbow pain. :!:

    It must be so difficult and tiring physically and emotionally coping with the symptoms that you and nordman have described. :roll:
    My dear mum used to have terrible 'restless legs syndrome'... it annoyed her more than any other pain that she had.

    I do hope you get the treatment that will help you once the x ray results are back. :wink:

    keep us posted!

    Iris xxxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    It is unclear whether there is a genetic component to fibro, but as it often goes hand-in-hand with other auto-immune complaints, I suppose the chances must be pretty high. I do hope that they can sort you out, and soon. I do know that is is a tricky thing to treat - I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Naomi

    You have my sympathy with it all, but restless legs, I do know about because I get this from time to time with a vengeance and then it will go, thank goodness or I am so very tired that I do not wake up. It is the dreaded rigmarole of getting out of bed and walking around when bad. I log on here when it is bad too or start googling things. :) I just could not stay in bed or I would go crazy - more crazy than normal! :lol: I would also be relaxing on the settee for example and then I would start fidgeting and have to get up and walk around. Perhaps that is why I do not lounge around for too long, anymore in case it starts up. What is also horrid is when you may nearly be asleep and then the RLS starts up. It can be truly miserable.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • woodbine
    woodbine Member Posts: 140
    edited 30. Nov -1, 00:00
    Thanks again for all your replies - and sympathy :)
    I've been making sure that I only drink decaff tea in the evenings - this seems to help with the restless legs, so it may be worth others trying it too. Apparently, eating lots of iron-rich food can help too.
    My cousin's legs jerk so much while he's sleeping that his partner keeps a campbed permanently in their bedroom as she's sick of being kicked - I'm not quite that bad (yet)!
    I've had my elbow x-ray - the result should be back in about a week, so I hope to know then if the problem is OA or soft-tissue related.
    Thanks again
    Naomi
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Please let us know how you get on - the caffeine tip is useful to know for those that suffer with the restless legs. I hope you have a good week-end. take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • woodbine
    woodbine Member Posts: 140
    edited 30. Nov -1, 00:00
    Hello again,

    I went to see my GP for the results of my elbow xray this morning. He told me that the bones of the joint are fine and that the pain is soft tissue related. He was non-commital about fibromyalgia.

    He then said that he would give me a cortisone injection into the soft tissue, and proceeded to do so there and then. He said that as it was into the soft tissue, not the joint, I wouldn't need any anaesthetic. The injection was pretty uncomfortable, but not agonizing.

    My mum had a cortizone injection in her hip a few weeks ago and was told that she'd get the best results from resting it completely for at least 2-3 days. My GP is notorious for avoiding signing any one off work if at all possible, and he told me that I should take painkillers and return to work. (Mainly computing, but involving lifting some files and sorting leaflets). I've been to work, but after 3 hrs it was too painful, so I've come home! I'm also feeling a bit light headed - don't know if that's the injeciton or the painkillers though.

    Has anyone else had one of these injections into the soft tissue/ around the nerve? Do you know if this is the usual advice (to carry on as normal), or is it just my doctor :? (Would also like to know how long it's likely to be sore for.)

    Naomi x
  • angie1973
    angie1973 Member Posts: 248
    edited 30. Nov -1, 00:00
    woodbine wrote:
    Hello again,

    I went to see my GP for the results of my elbow xray this morning. He told me that the bones of the joint are fine and that the pain is soft tissue related. He was non-commital about fibromyalgia.

    He then said that he would give me a cortisone injection into the soft tissue, and proceeded to do so there and then. He said that as it was into the soft tissue, not the joint, I wouldn't need any anaesthetic. The injection was pretty uncomfortable, but not agonizing.

    My mum had a cortizone injection in her hip a few weeks ago and was told that she'd get the best results from resting it completely for at least 2-3 days. My GP is notorious for avoiding signing any one off work if at all possible, and he told me that I should take painkillers and return to work. (Mainly computing, but involving lifting some files and sorting leaflets). I've been to work, but after 3 hrs it was too painful, so I've come home! I'm also feeling a bit light headed - don't know if that's the injeciton or the painkillers though.

    Has anyone else had one of these injections into the soft tissue/ around the nerve? Do you know if this is the usual advice (to carry on as normal), or is it just my doctor :? (Would also like to know how long it's likely to be sore for.)

    Naomi x

    I've never had one but of the people I know who have had, they rested for a day or two before going back to normal, so maybe your doctor is a little hasty!

    I wouldn't wish OA or fibro on my worst enemy!
    _______________________

    Only 99.9% possessed by the giggle monster.........the other 0.01 % just eats chocolate..
  • angie1973
    angie1973 Member Posts: 248
    edited 30. Nov -1, 00:00
    nordman wrote:
    Hi my name is Bobby.I have fibromyalgia, a complex illness and endless amount of symptom that it cause me is very exhausting and devastating.
    Fibromyalgia cause me extensive pain and fatigue and i feel that i have no power in my body. I feel that my arms and legs are tied to something very heavy, and i haven't no strength to move forward.
    My Bowel is irritated, which cause me constipation, diarrhoea, regular stomach pain and gas and i feel that i have to urinate very often. To visit the toilet frequently when i am so exhausted and have muscles pain and weakness, make my condition worse. Stiffness effects many parts of my body, especially in the morning or after sitting or standing in one position. If i don`t change my position very often, the stiffness and pain getting worse.
    Pain is often followed by muscle spasm and becoming more severe in parts of my body that i use, my legs and back. I have constant headache which is very stressful and devastating. I have an uncomfortable sensation in my legs, Its feel like something running or moving in my legs. I can have the symptom all day, but usually when i am sleeping or resting and sitting in the same position. I have an irresistible need to move my legs for relief of the horrible and uncomfortable feelings. It disrupt my sleep, make me more exhausted, causing me to wake up suddenly, and also make it difficult for me to sit comfortably anywhere, in a sofa, in a chair, in a car. sometimes i have cramps and muscle twitching which are very painful.
    I have problems falling asleep or staying asleep and if I sleep i wake up in the morning feeling exhausted. I have balance problems, difficulty concentrating, forgetting thing and have poor memory. I also cannot stand odours and loud noises, they cause me irritation, headache and dizziness that i will smack my head into the wall.
    I feel constantly numbness or tingling in my hands, feet and arms. I am clumsy, Handgrip is poor and i can`t help it to dropping and breaking things. Muscles weakness, fatigue, Pain and discomfort considerably limit my ability doing things It's very painful to touch many part of my body. I don`t like anybody to hug me or have an arm around my shoulder. Even hand shake is painful. I feel severe pain when somebody help me washing my shoulders and back, it feels like that the person scratching my back and the pain feels deeply inside.
    To be diagnosed fibromyalgia you should be referd to pain managment clinic

    It's funny just how many things you forget you are affected by with Fibro. When I list mine, I forget half of them because the fibro fog kicks in, but all those things I get, especially the photophobia and sensitivities to noise and smell are hideous for me.

    I also can't bare the sensation of clothing on my skin some days. Bras straps for me are a nightmare as they drive me mad as to synthetic fibres etc. Amazing what it does to you.

    The restless legs is a nightmare for me, but even changing what I drink or eat hasn't helped me much, although it gets worse the more exercise I do - mad isn't it!

    Hope you are feeling OK!
    _______________________

    Only 99.9% possessed by the giggle monster.........the other 0.01 % just eats chocolate..