Nine fibro tender points;

I have received a letter from my consultant saying I have 9 fibromylgia tender points. I did not know I was being tested for this as I was being prodded and poked all over due to severe all over body pain. All joints are sore and extremely week, muscles in tops of my legs ache and burn. I have carpal tunnel syndrome and my wrists and fingers swell (fingers especially at night). I get severe all over pins and needles, like being stabbed inside out and have been in a wheelchair for nearly two years due to the weakness, pain,constant tiredness and my leg muscles are just to weak for me to stand up properly. I have had a full MRI nuclear scan last week and xray to my cervical spine and hands. The radiographer asked if the sever pain in my shouldwes is worst on the right, which it is, he could see an immediate problem that the vertebrae in and at the top of my neck have closed together and are likely squeezing nerved - he said they looked fused. I am not seeing the rhuemy for another 7 weeks for the full results but am scared (other than my neck I will come away without a proper diagnosis for the all over pain. I also have cystitis and kidney infections one after the other and wondererd if this could be a symptom of fibro? I was in ITU before Xmas for 8 weeks (acute liver and kidney failiure, sepsis, encephalitis, portal hypotension etc and my husband and children were told that I would not survive and withdrew life support intervention. My breathing level went down to two a minute, which has caused slight brain damage, poor memory, forget workds and make spelling mistakes. Can no longer cope with numbers at all :( I got to the stage I was given 4 hours, the donation team were ready but for some reason my kidney started working and I have been slowly improving. My consultant isstill trying to find what caused it - I have only ever drank for a 4 month period in my life and I am 46. My consultant said there is too much damage than from such a small amount of drink. I am being tested for antibodies because t could be an auro immune disease. The rgeuny checked my blood foe ra antibodies, which I have not got but ir reqesting another test for CCP antibodies. If nothing other than my neck and shoulder problem show up, is 9 tender points enough to be diagnosed. After all this time I want a name and am scared I will never have one so will not know how best to hekp myself, do different Dr's have different criterias? Sorry fot the long post and many thanks for any advice you may give, So my symptoms sound familiar for fibro? Many Thanks xx

31 Replies

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  • Hi twintastic

    I am so sorry to read that you have been through all of this and still not got the answers that you need and deserve. From what I have read on the links below, there is a possibility that they will say it is Fibro, but of course, I am not a doctor and cannot say for sure?

    fibroaction.org/Pages/How-I...

    nhs.uk/Conditions/Fibromyal...

    I have pasted you below as slide show of the tender point test i.e. where they are looking.

    webmd.com/fibromyalgia/ss/s...

    However, with everything that you have been through, I would definitely expect a full and thorough assessment, testing and examination before I was willing to take any diagnosis, regardless of what it is?

    I want to genuinely wish you all the best of luck and of health; for you and your lovely family.

    All my hopes and dreams for you.

    Ken x

  • Thanks so much, Ken. Ron

  • Ken,

    Thank you for your kind and moving words :) I cannot begin to imagine what my husband and three children went through (and we had been getting ready to move from our family home whilst I was in hospital!). OI am going to read my way through the links you have kindly posted. I also wonder if fibro can run through families as my niece has it along with cfs, low thyroids, Hyper joint mobility Syndrome, Potts and is just waiting for a final diagnosis of eds as well. I have always had hyper mobility joints (until they were too painful and weak to use). I'm hoping (funny word I know) if it is fibro they can diagnose on this amount of pressure points if I fit other criteria.

    Many thanks for your help Ken. Take Care, Mel xx

  • Hello again,

    I hope that this can go along way in helping answer your question about whether Fibromyalgia is heredity or not? It is a very interesting link from a clinic about family members with Fibro:

    mayoclinic.org/diseases-con...

    I can understand that you could find this upsetting, as my wife has Primary Progressive MS, and we have 2 grown up children and 2 grandchildren. So she gets quite upset at the thought they might develop MS sometimes during their lives.

    I genuinely hope that your have all managed to move house and have settled in well? From what you have written I think your family love you very much, and I always think that we are the most special person in the whole wide world to those who love us so dearly.

    Good night

    Ken x

  • Thank you, I found this interesting as my aunt has it :)

  • Thanks tiredalot40

    In the cold light of day, I think my mum may have had Fibro, as she was constantly complaining of pain all over her body but nobody ever took any notice! She did not have a good GP at all, and my dad just ignored her all the time. Sadly, I lost her a long time ago.

    Take care my friend

    Ken x

  • Morning Ken, Its funny how when you look back sometimes the rosey glow fades and you see the things you missed at the time, or in my case, was too busy having my life to notice :( My aunt has fibro and her daughter they think is going to add it to her list as she has CFS too. My hubby suffered with CFS as well, although 80% better (now he tries to make sure I don't overdo things, he is a real wee sweetie). Apparently the support group my aunt attends seem to think if you have lived with or have had CFS, Fibro is more prevalent. Don't want to think that way or my poor hubby would think it was his fault :) ooooh the leverage I would have..............sorry of in the land of male domination!!!! Hope you are well, S x

  • Hi tiredalot40

    Thank you so much for that. I hope that your husband isn't too ill? And that your aunty doesn't suffer too much with her Fibro?

    He sounds a good one looking after you? You take care my friend

    Ken x

  • Hi Ken, Don't dare tell him that! He is one in a million but we don't tell him things like that, he get the strange notion that I actually like him :P

    Hope you are well today.

    S x

  • Oh dear! Nearly choked on my tea when I read that!

    Take care x

  • On what? Poor ken :)

  • Of course you like him! You love him! x

  • Never, ever, ever :) now drink your tea slower :)

  • Hi twintastic,

    So sorry to read that you gave been through so much, ken has offered better advice than I could. What I can say is if you are offered carpal tunnel release surgery, go for it. I have had both hands done and it has solved that problem at least. I hope all goes well for you :)

  • Thank you for your reply. It is lovely to hear a possitive result. I hate CTS, is it also seems to make my wrists very weak, which I use a lot when trying to stand up from sitting to move into my wheelchair. I will definately bear this in mind. Many Thanks, Mel xx

  • I would find the same if I had to put pressure on my wrists, they are still recovering and that will take a while yet, but the difference I have felt is amazing. Well worth the discomfort at the time. Have you tried splints at night? they worked for a while for me until the fibro pain made them useless. I would have had real difficulty getting to sleep for the pain in my wrists, wore the splints (only at night) and it took the pain out of it, also stopped me twisting my wrists into strange positions when I slept. Hope this helps, S xx

  • Hiya twintastic, I also have had both my hands done and had great results . I hope that you can also . Wish it had the same effect on the rest of my body ! Good luck and look after yourself x Billie

  • Wow, another positive outcome. Congratulations, I hope it has helped ease pain and movement :) Many Thanks, Mel xx

  • Hi, if I were you I'd look into Ankylosing Spondylitis. The fusing of the vertebrae and the general weakness in the legs as well as the host of other maladies you suffer from would lead me to want to investigate that.

  • Thank you, my previous GP did say I had this after an X Ray I had, again of my cervical spine, as I was having neck trouble due to sitting in one position all day for my job. This was in my early twenties and I am now 46. I had physio at the time and as the probs wore off, I forgot about it. I have been bed or wheelcharbound now for around 2 years, maybe due to this? or maybe made worse by this. Due to inactivity and being in ITU for even only 8 weeks my liver consultant said muscle wastage can be severe. I will investigate what treatments can be helpful. I feel I am in limbo until I have proper diagnosis, and then can do the best for myself from there. In my head I believe I have a few overlapping problems. Roll on 7 weeks now to see the consultant for my results. My nightmare is coming away never having an answer. I hope this is a natural thought? Have others had it? Many thanks for your help UK, Mel xx

  • Hello Twintastic,

    Sorry to hear you've been through so much and you sound distressed by not having any answers. I can only imagine what you and your family have been through while you've been so poorly in ITU.

    I really hope they are able to diagnose you soon, so you they can begin to give you the treatment you need. You may very well have a mixture of conditions with similar symptoms including Hypermobility, as you've discussed making it more difficult during the diagnosis process.

    Here's some information about diagnosing Fibro;

    fibroaction.org/Pages/How-I...

    Info on changes to Tender Point Test 2010;

    fibroaction.org/Pages/New-D...

    Research has shown that there may be genetic factors involved in Fibro that could lead to a genetic susceptibility to the condition. If you have a close family member with the condition, you are more likely to develop Fibro, but you will not definitely do so(Lindsey Middlemiss Chair & Founder of FibroAction 2009)

    fibroaction.org/Pages/What-...

    Usually, reports mention there is a trigger of acute virus, trauma,whiplash etc.Pre-existing conditions (even if the other diagnosis comes after the Fibro diagnosis), such as Hypermobility Syndrome, Lupus or Rheumatoid Arthritis can also lead to Fibromyalgia, when it is then often referred to as secondary Fibro. Hypermobility Syndrome in particular is now thought to be a risk factor for developing Fibro(Lindsey Middlemiss Chair & Founder 2009)

    fibroaction.org/Pages/What-...

    We did a fairly recent poll you may be interested in;

    healthunlocked.com/fibroact...

    You discussed recurrent Cystitis, this sounds similar to a conditions we've discussed on the following post;

    healthunlocked.com/fibroact...

    You've seem to have had many good responses and I wish you all the best. Please let us know how you get on.

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Thank you Emma for your help and posting links. I am working my way through them. What a wonderful forum for support which has been friendly, very informative and fast. You should all be very proud with the good advise and support all posters on this thread have offered. Take Care, Mel xx.

  • No problems, very welcome. Glad you are finding the site so helpful, this feedback means it seems to be doing exactly what is designed for ! :)

  • Thank you oscarbravo, your post has touched so many areas that I have problems with. As I said my vertebrae at the top of my neck and spine appears to have fused together, the person taking the xray instantly asked if the pain was far more on the right side, which it is. Connecting neck and shoulder problems with hormone seems obvious but one I have never thought of. My F3 and F4 have both been out of range, and my cortisol was chronically high suggesting hypothyroidism or secondry hyp (which I believes stems from a problem with the pituritury gland). When I had receded to the point of needing a wheelchair I had been blacking out, b/p dropped to 60/40 and glucose to 1 (I have diabetes type 2). I was admitted to hospital, sadly had a not very nice specialist 'nothing wrong with you etc.. even though results were all over and I was severley low in vid, b12 and magnesium. Dr diagnosed adrenal crisis / exhaustion and sent me home in chair with sick bowl. My periods stopped out of the blue at this point too. So this side all points to hormone involvement. I have constant kidney and urine infections and kidney failiure three times now. I saw my gp recently as my weight is gaining rapidly, I am eating the same healthy diet full of veg, pulses, beans, fruit and small amounts of protein and oily fish, but feel the amount of drink that I have does not correlate with the amount I wee, I know my weight gain is due to this. This again ties in with your mention of your sisters kidney and her bladder not emptying properly. I know this is my problem, I was naughty and borrowed a diruretic - I weed over 15 times ine one hour and lost 7lbs in weight! I also have severe muscle wastage, made worse by 8 week in ITU and am fighting hard to regain some but feel I cannot advance until I have proper names and dignoses so I know what I am facing or fighting with. I have come this far and will not give up. I think your comment is spot on and I will mention it to my endocrinologist as so far, she has been the type of consultant who will listen to me. I will let you all know how I get on in 7 weeks. I will also ask about any hereditary link and see what she believes, Any help / advise is better than none so I will take a list of question for both rheumy and endo. Thank you so much for showing your thought / research. Everyones replies have been a great help and are gradually lifting me out of the clouds of misery that goes hand in hand with being poorly. All the best everyone. Mel xx

  • I'm praying for you!!! You need to see a doctor like yesterday. Even if it's not the same one. It's your life on the line, they should see you sooner. Maybe a call from your family doctor can open some doors. I'd check with pain management when you are able to. God Bless You Sweetheart!!!!

  • Thank you Mitzy, I have been very lucky in that my GP and endocrinologist haven taken my chronic pain and problems far more seriously since my 8 weeks in ITU, before then I did feel no one was really believing how I felt or that I was ill, but everyone knows and should listen to their own bodies. I even told my husband I Knew I was dying in the two weeks leading up to my emergency admission :( Both my GP and endo chased my rheumy appt once I was home from hospital, although I do feel a little down at having to wait 8 weeks for the results & diagnosis. It sometimes feels the longer it goes on without correct treatment the more damage it could do. I am now wearing Butrans patches, 1 a week, slow dose release pain killer. I did not think it was working as the pain never goes, but when I was without one for a few days I was in all over agony. I will not let my prescriptions get behind again! Thank you so much for your prayers, I find it very humbling that people would pray for me :) Take care, and once again, many thanks. Mel xx

  • Sweetheart, I feel like this site has helped me at least feel useful again. Even though it's only advice and thought's and prayer's I can offer it helps being able to contribute. You take care of yourself!!! If you need to talk or are feeling down I'm here. Hope you get good news Mel. Best of luck and may God Bless You

  • Hello there ,so sorry for you ,I know what its like to have many different illnesses I have all 18 tender points and it took me 40 years and going to a pain clinic group to get a final diagnosis of fibro ,before that the docs would say is its very likely you have it .I know IBS is related to fibro as are many other things .Keep going back to doctors I don't like the sound of fused bones .All the best with it though and let us know how you go .xx

  • Many thanks Matriz, I am very sorry you have all 18 tender points. I did not realise the test was done, I was not asked to say yes or no or give a score range and I know some points were painful and I kept quiet thinking if I said yes to nearly everything she might not believe me!! I felt no one really believed me untili was in ITU for 8 weeks. I told my husband 2 weeks earlier that I knew I was dying. He called a district nurse out as I could noy physically move and get to my GP. The nurse did blood tests and within an hour a group of consultants were waiting at the hospital for me. My last words when we arrived were 'Am I going to die'? and I can remember the Dr not answering but looking towards the other doctors. Then 8 weeks later I was slowy coming round after having life support withdrawn. I think this is why I am now determined to get some answers and diagnois to what has happened and has been for the last two years. I honestly believe it is a mixture of overlapping problems. Roll on 8 weeks when I start getting some proper diagnosisies . Yes, I find the fused bones scary, these cause constant ongoing pain in my neck shoulder arm wrist hand and fingers and restricted use of that side. Again, once I get the official diagnosis for that one part, I feel I can progress and find treatment. Hope you are well and take care. Mel xx. I will definatley update in 8 weeks time.

  • You are in. a state I can see that and my heart goes out to you . I also have lots of things wrong at the moment really struggling with my legs the pain is unbearable a nd the other night I just sobbed and sobbed hub didn't know how to help me . It's so hard I know but you go back and back until you get the help you need , I just wish I could go but I have a bit of a phobia about asking for help and going to doctors so I have to put up with my pain . What we all need is an understanding doctor who believes us but they are far and few I believe . Good luck xx

  • Hello,

    I received my diagnosis of fibro today. I had a steroid injection as my doctor thinks I may also have underlying psoriatic arthritis, if the steroid helps improve my joint pain it will go towards the diagnosis of PA.

    Matrix, I hope you are feeling better and the pain in your legs has eased off. I get dreadful pain and burning in my thighs. My right leg is also numb below the knee, I asked the consultant if this could be fibro but she did not think so and is referring me to a neurologist.

    It sounds strange but I am pleased to have part of a diagnosis at last so I know what I am dealing with.

    Best wishes to everyone,

    Twintastic.

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