Is it Fibromyalgia or something else

Hi guys I have several chronic medical conditions damaged 2 discs in my spine 6 years ago then 6 months later was diagnosed with a heart condition left bundle branch which worsened to total heart block and arrhythmia requiring a pacemaker to save my life. 3 years ago I noticed numbness in both my little finger which over time has progressed to 3 fingers on both hands they are hypersensitive to cold. It has now affected my feet as well, have had nerve tests but they have not shown anything. I suffer with bouts of total exhaustion it's like hitting a brick wall. Recently I seem to get pain for no reason and restless leg syndrome. I am on multiple medication. Both for the back pain and my heart. Gabapentin and Tramadol. I currently work full time but must admit I am struggling big time. I can't afford to go part time. I have friends suggesting fibromyalgia. Should go to GP but so fed up with the lack of support due to "my complex medical history" as they normally say. I would love to hear your thoughts as pretty fed up with the last few years.

12 Replies

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  • Hi Sherrill welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    I'm sorry you are struggling with work and its hard when you on medication. Your symptoms are related to Fibro but it could also be many other things. Fibro mimics the symptoms of so many other conditions. Normally your gp would do a series of blood tests to rule out things like RA. Lyme's disease, then if they all come back clear, you would normally be refered to a rheumatologist. It does tend to take a long time to get diagnosed.

    Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

    fmauk.org

    Peace, luv n light

    Jan xx

  • Hi Jan

    I wish...

    It's unusual in Sydney (Australia) for GPs to test for Lyme Disease and many other things that could provide some answers for research!

  • Thank you

  • Hello Sherrill and a warm welcome to our friendly fibro site where you can get help, advice, support and understanding. Our mother site fmauk.org has a wealth of information, including guides and links.

    My goodness, you have a lot of health issues, no wonder you are struggling. If you feel you are getting nowhere with your GP, perhaps you should see another in the practice or change practices altogether.

    A lot of our members have complex medical history and getting treatment can often be difficult. It is almost as if the opinion is "you have enough to be going on with that is more serious than fibro" I have had that type of comment myself.

    It does sound as though you may have fibro, particularly the "brick wall" feeling and RLS that so many of us can identify with.

    I note you are already on Gabapentin which is usually the first call for fibro medication, so if it was going to ease your symptoms you should have had some relief by now. There is a sister drug, Pregabelin which your GP might consider, otherwise it does tend to be painkillers and possibly anti deppressants.

    I suggest you consult your gp and perhaps ask for a rheumatology referral and a referral to a Pain Clinic.

    As far as work is concerned, have you thought of applying for PIP? It is non means tested and may be a way of reducing your hours.

    Hope this helps

    Kay

  • I have been under the pain clinic for some time due to my damaged back. I have also been under neurology. The nerve tests were fine. Now each department are saying the other ordered the tests therefore can do nothing. So I am in limbo. The Dr hasnt seen the results so won't do anything. So frustrating.

  • Hi Sherrill

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of your suffering and struggling, and I would definitely talk to your doctor about this as they will need to run tests to rule other medical conditions out of the equation before any diagnosis of Fibro can be made.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • The numbness and total exhaustion and pain sound as though it might be low B12? Has your GP done a blood test recently? I suggest asking for B12, ferritin, folate, VitD. and a full thyroid function test.

    Low VitD also causes aches and pains, and as you have several long term illnesses, you may not have been getting out into the sun much?

    Do you have any digestive issues?

  • I have all those symptoms and my blood tests 18 mths ago didn't show any significant deficiencies.

    I saw a GP years ago that works ''more holistically' and uses IV vitamins but having the treatment twice per week and all the other supplements got a bit expensive.

    He sent me home with a big box of vitamin B12 for me to inject weekly which I did religiously.

    It didnt make any difference to my fatigue levels which I'll put down as a 2 out 10, pain not as excruciating as it is now either! A decade I'll say my fatigue was 6 out of 10 or slightly better.

    A couple of years ago, I was diagnosed with adult ADHD and I'm taking stimulant meds which really help.

    Prior to this I had a sleep study and from memory they told me I slept ok and had the normal cycles. They told me to take sleeping medication as per usual so I wonder if this makes a positive difference. I still wake up like I've been run over by a truck and my legs in particular, ache so much!

    I'm about to have a repeat of blood tests and with my pain and fatigue being through the roof I wonder if it will show up anything.

    I'm finding the leg pain the worse after lower back and hands which I attribute to degenerative arthritis.

    Ive been to a few specialists and just sacked my neurologist and swapped to a pain anaesthetist. He seems much more interested than just charging me hundreds of dollars and sending me off within 5 mins within 5-10 mins with a new medication that I have to stop because of side effects or bc it's isn't working! Because I have the fibro, it's been a real fight to find specialists that would even consider the pain and stiffness is from arthritis and spondylitis and they tell me I'm over sensitive to pain and many people my age are walking around with the same as me and are in symptomatic!

    I've also been told by a neurosurgeon to wait 5 years and I'm walking into her surgery with a walking stick, then she'll operate because I'm still too young (48) to have any interventions apart from cortisone injections which only work while the anaesthetic is working!

    It was so frustrating to hear something could be done now and I may still be able to continue to care for my 8 yrs old daughter who i feel doesn't deserve to see me in pain bc I took her out or just... because!

    I also work full time to cover a big mortgage on my own that I'll die without paying off, I'm sure and some days I wonder how long I can keep going like this!

    I take my pain meds 1 hr before I get up but I've noticed that it doesn't often make any difference. What does is getting out of bed and out of the house and walking around though! I find sometimes if I'm distracted, I dont feel pain but it can change so quickly and I can't get my meds in quick enough!

    I used to take tramadol and it helped

    until it didn't anymore!

    There's a long acting tramadol and one that is similar but supposedly better but didn't help me! I think the dose was 400-600 daily in 2 doses!

  • I have had loads of blood tests all come back fine I take vitamin d regularly.my vitamin b levels are fine. I have regular checks for thyroid function as one of the meds I took Amiadarone caused Thyroid problems. Thankfully they returned to normal some months after stopping the Amiadarone. I do have IBS and have had digestive issue's. on and off

  • When the doctor says the results are fine, they may only "just" be in range. Have you seen your results yourself, or do you have a copy of them? Digestive problems may indicate that you have trouble absorbing the vitamins from your food. The levels in the blood aren't always a good indicator that they are reaching your cells, where they are needed.

  • Thank you for that. I haven't seen the results for myself. I am going to start the vitamin b high strength I am already taking the vitamin d high strength x 2 a day. To be honest at the moment I don't know what is worse the pains of the tiredness. I suppose it's a bit of a vicious circle. If your tired the pains and restless legs get worse and they in turn make you more tired. I am so tempted to go to the dr to see if they will sign me off for a week or two to get some strength back. But I am trying not to give in to it

  • I do hope the vitamins will help you feel better, I know how awful it is to feel so terribly tired and achy. There is a B12 spray you can buy over the counter at health food shops. You spray it under the tongue, where it can be absorbed avoiding the digestive system. That has helped me in the past.

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