Newly diagnosed...a few questions!!

Hi all

After years of backwards and forwards to my GP with numerous aches and pains to which I have never really gotten an answer, today I have been tentatively diagnosed with fibromyalgia. I have read a little about it as so many of my symptoms seem to fit - the main one being tenderness and a feeling of being bruised. I also suffer with extreme stiffness after activity and first thing in the morning, upper spine pain, random muscle aches, swelling in my clavicle lymph nodes, trouble sleeping... I'm 45 and feel like 75... The pain and stiffness I get following any activity is having a really negative impact on my everyday life. I'm missing out on such a lot as I either haven't the strength to do it in the first place or know that I wil suffer afterwards.

So, anyway, I have finally found a lovely GP after years of seeing different doctors who seems to have joined the dots of all my aches and pains and is sending me to see a rheumatologist.

The appointment won't be for 2/3 months and we've decided to hold off on any medications until I've been seen.

I have a few questions though and wondered if anyone on here would mind helping?

1. I don't have fatigue at all - yes, I have trouble dropping off and am often awake until well in to the early hours but I don't feel tired. This is worrying as I was under the impression fatigue was a prime symptom of fibro. Can you have fibro without fatigue?

2. Nothing touches the aches and pains. I've tried paracetamol, ibuprofen (gel and tablets) and codeine. I permanently have a hot water bottle somewhere about my person!! 😆 If I'm totally stiff after activity, a hot bath helps. Why do no over the counter painkillers help?

3. Will I ever be physically fit again? I'm only 45. I have a young son. I want to play football with him. I want to do a Pretty Muddy obstacle course. I want to climb Snowden!! My mind is willing but my body says 'no chance!'. 

4. Swollen lymph nodes - I've had them scanned and everything looked fine but it's freaking me out in case it's something sinister. They can literally be swollen one minute and gone the next, or I can have hours/days of swelling then days when they seem perfectly fine. Anyone had this at all?


5. Can fibro pain be stationary? I've had a tender spot below my bottom right rib for over a year. An ache spreads into my rib cage. I've had 2 scans and an X-ray - nothing!! So is this fibro as I expected  the pain of FM to be more mobile? 

Thank you SO MUCH for taking the time to read all this!!


Ps. I also have under active thyroid and have been through early menopause. My GP says that hormones often play a part in FM so that all adds up in a way xx

17 Replies

  • Wow! You want it all in one go lol. 

    1 - don't know

    2 - unlike most on the forum I don't have many problems with Fibro pain, but from what I have gathered there are very few people helped by pain relief meds. You could also say that the pain meds are working for me so I don't feel the pain. Just to confuse you lol. I had pain long before I was diagnosed with Fibro. 

    3 - I doubt it. I know that's not what you hope to hear. The current thought by the powers that be say that Fibro is not degenerative. Anyone I have spoken to or read about would argue, me included. My Fibro has got progressively worse over the years.

    4 - I suffer with swollen lymph modes. Is it caused by Fibro? Not a clue! It's too easy to blame all ills on Fibro. My lymph glands had me in hospital when I was 8 and keep popping up every now and again. 

    5 - I will read others answers on that one! As Fibro affects muscles and connective tissue I don't see why it should keep moving. 

    Sorry not to be able to help much more. You will find that we all have different sets of symptoms. Also what helps one may not help another.

    My best advice is read as much as you can about Fibro. The more you know the better. Search the Internet, read medical articles, etc. You will find that if a forum member finds out something new in regard to research or pain relief, even devices that help, they will post them on the forum for all to share. I think that is what makes this such a strongly bonded forum. We have all shared similar experiences 🐸

  • Haha, lol, yes - may as well get all my questions out of the way in one fell-swoop!! 

    Thank you very much for your reply - that has all really helped 👍🏻☺️ I think after all these years of 'mystery' aches and pains, at the moment I'm just happy to have found a possible cause. I've imagined all sorts over the years...🙁

    I'm pleased that you are doing well on meds - that's promising! And also a relief about the lymph node thing.

    Thanks again Sorebones xx

  • Any time 😊. If you don't ask......

    Most of us (I can't say all as some disagree) have felt that it must be all in our heads, there has to be something wrong. Being given the label is double sided. Great that now you know, then bad with all it involves.

    Welcome to the club 😀🐸

  • Hi there

    I will try to answer your questions as best as I can!

    1.  That is a very interesting question.  Without going into too much detail, lack of sleep is one of the main causes of Fibromyalgia.  As you appear to be sleeping, I am wondering whether maybe you might have a different condition that is very similar to Fibro?

    2.  The reason for having a doctor is so that they can prescribe stronger medications than the meds you can buy over the counter.  Many of these drugs are extremely strong and/or addictive.  A GP needs to monitor these medications and to make sure that there are no contraindications to you taking them.

    3.  Who knows!  Unfortunately none of us know the answer to that question.  From what I have seen and heard on the forum in the last 4 years, I would have to say, very doubtful.  I have had Fibro for 34 years.  I managed to stay fairly active for a good few years, but in the last 5 years or so (following some severe traumas) I really do struggle.

    4.  Swollen nymph nodes.  Sorry, I don't know.

    5.  Pain affects everyone very differently.  My pain is constant, but does move around.  As you have had the all clear on your tests, maybe if you can manage to stop thinking about it (not easy I know) you may find that the pain lessens.  I do hope so.

    I am not sure whether any of these answers are of any help whatsoever!  

    Welcome to the forum :) and good luck with your Rheumatology appointment.

    Wishing you less pain and more peace

    Lu x

    Volunteer Administrator

  • Re the fatigue,  I thought it was a major symptom of fibro, although I personally don't get it every day (I get the pain every day though) but we are all different.  I tend to sleep quite well tbh compared to a lot of people on here and when I pointed this out to my rheumy who tentatively diagnosed me they just dismissed it...

    Aches and pains after exercise are commonplace with fibro, as is the stiffness.  But this can be the case with other conditions as well.

    The swollen lymph glands... I'm not sure.  What blood tests have you had to rule out other conditions?  

    Re over the counter painkillers - has your doctor tried other painkillers - such as gabpentin or an anti-depressant - both of which are often frontline meds for fibro?  Sometimes over the counter painkillers won't touch fibro pain at all.

    I hope you get some answers.  Fibro is usually a diagnosis of elimination - the docs rule out other more common conditions/illnesses first via blood tests, x-rays, MRIs.  

  • Hey! Thanks for all your replies 👍😊 I've had a lot of blood tests over the past 2/3 years - the ones I can remember are full blood count, thyroid, FSH, Vit D, and the test for inflammation? I've had numerous scans - pelvis, abdominal, mammogram, clavicle and neck lymph node scan, chest xray, pelvis x-ray, and the test that measures bone density...also I have tinnitus so had an MRI on  head! There's probably more - each and every scan and x-ray is fine. I'm officially post menopausal aged 45 with 2 1/2 years period free  and my TSH has been steady since mid 2013. I'm either a medical mystery, a hypochondriac or I have Fibro!! 

  • If you get an answer? please share.  My co-workers joke that I'm going to make some doctor famous when they find a name for my strange & frustrating conglomeration of symptoms.

  • I have to say that I missed the bit about hormones playing a big part in Fibro. I have never heard that before.

    Has anyone else, just out of interest? I've had Fibro for 34 years and I'm still learning 😯 xx

  • Yes I have heard this Lu.  In fact I realise now my symptoms started to get worse after my doctor took me off hormone replacement therapy when they had all those scares about it.x

  • That's interesting. Does make you wonder xx

  • Hi Lu

    Don't forget female sex hormones which are the ones we normally refer to when we talk about hormonal women are not the only hormones in the body.  They play a large part in the body's systems and many illnesses can be triggered by some sort of hormonal imbalance.   this is an item from Dr Sarah Myhills websitte about it

    A quote from the NHS website re fibro and hormones

    "Chemical imbalances

    Research has found that people with fibromyalgia have abnormally low levels of the hormones serotonin, noradrenaline and dopamine in their brains.

    Low levels of these hormones may be a key factor in the cause of fibromyalgia, as they're important in regulating things such as:





    your response to stressful situations

    These hormones also play a role in processing pain messages sent by the nerves. Increasing the hormone levels with medication can disrupt these signals.

    Some researchers have also suggested that changes in the levels of some other hormones, such as cortisol (which is released when the body is under stress), may contribute to fibromyalgia."

    A few articles that discuss the connection


  • Hi mrspinkrat

    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 can see that you have been given some wonderful replies so I will simply genuinely wish you all the best of luck with your Rheumatology appointment and please take care of yourself.

    All my hopes and dreams for you


  • Hi,

    I am not diagnosed yet but wanted to add that I get a lot of pain around my rib cage. Diclofenac helped so i was sent to Physio. They diagnosed me with costochondritis which is inflammation of the tissue between your ribs in the middle of your chest but my ribs often come out of place slightly and that's very painful. The last serious one i had they strapped it up  land it's been a lot better since. Have a prod around your ribs and if you find a tender spot, maybe ask for a Physio referral? Just a thought 😊 xx

  • Hi, thank you so much for your message. Initially costochondrosis was in question but my pain is not around the sternum's my bottom ribs, the very tips. Thank you so much for trying to help though and good luck!

  • Hi, I'm so sorry to hear of your problems.

    I think from reading other people's problems that this can happen to anyone and there doesn't seem to be any rhyme or reason or one cause that brings fibro on. Also not everyone suffers from the same things or as badly.

    I was told I had this after years of seeing doctors, so might have had it coming on for about 9 years. I think the problem is that the signs are not clear until you get a lot of them and they can then say that everything points to fibro.

    Keep going to the doctors as they can try lots of meds for it, so don't dispare. I Unfortunately can't have some as I've goy glaucoma and the ones I've tried so far don't help. Having said that others on this forum seem to be getting help from some of these meds, so it must be what works for the individual.

    As for the sleep probs, I too feel wide awake and can't sleep. When I do I wake every day with a migraine and feel like I've been run over by a truck! I feel tired and it takes me a couple of hours to start moving and getting through the pain to start the day!

    No pain relief, eg ibuprofen etc helps me either. I do use a back massager and use Volterol cream and take hemp tablets at night. The hemp chemicals are supposed to be like marijuana and help, I think they do help me relax more, heck any things worth a go! I get them from Amazon. I also listen to talking books so I don't lie there stewing over things.

    As for it going, I'm sorry to say my doctor said I'd have it for life. I do know that they are doing a lot of research into a cure and look what they've done for MS sufferers, so I live in hope that it won't be too long before they can help all of us too.

    The support from everyone on this forum has also been a great help. People have taken there time to help and suggest things that I'd never heard of. It's very helpful and touching. I do hope that you get some help and are on the path to less pain, don't give up. You might be the one that responds well to some meds.

    Good advice I got from someone on the forum was only do what you can when you can, choose the important things to do.

    I hope that the support from the forum helps and you feel better soon.

    Best wishes.

  • Thank you Fibropop for your lovely kind words. I had a bit of a meltdown today and a few tears. Not sure why really - years of pain, finally a possible diagnosis, sadness that I'll never be me again?? I don't know but  I'm lucky to have the support of a great partner and fantastic children. Hey, it could be a lot worse! Many thanks and best wishes to you xx

  • Hi,

    It's still worth having a prod around the ribs as costochondritis and rib problems are two separate problems. I totally understand your frustration and it's awful when you're in pain with no explanation. I hope you get one soon xx

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