Hi their, still awaiting other refferals(respiritory and neurology)
I was told last week by msk team they would have diagnosed me with fibromyalgia if all was fine with other referrals.
My symptoms are right shoulder pain, SPINE pain! Started in muscles either side of spine being tender now it's like spine pounds/burns at times. Feeling weak, knee hurts, ankle joint hurts, back of knees hurt, burning below collarbones and pain below rib cage, hip pain all over all at once!bowel issues,everyday. but I really do feel like this constant throughout the day wake up feeling tired and like every joint is hurting me and then that's how I feel the whole day until I go to sleep to wake in the night to feel it.
Is this normal for all over all at once weakness and great pain, is spine pain normal in fibro?
Thankyou for your time
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Gg4l
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Unfortunately yes I have everything you’ve mentioned but other conditions to. I’m currently on day 5 in bed cos of the pain and fatigue it’s hard work. Hopefully you will get some definite answers soon and be able to manage the condition better. Good luck 🙂
Thankyou for your reply, what scares me is the spine pain I'm getting it at rest and when inhaling. I believe my joints are slightly more painful on my rightside(shoulder,knee)
I'm seeing respiritory soon as I haven't felt well since I had chest infection so was adamant to see them due to how all this started, burning chest pain,shoulder and rib pain makes me think it's my lungs, cant really switch off at the minute, have 2 small children finding all this hard to cope with my mind is in a mix of is this fibro or is this something totally lung related due to my terrible chest infection, had pleurisy after it and was told airways was narrow but I'm guessing they do sound narrow with infection, struggled trying to not worrey after that comment chest infection I had what wouldn't go with 2 lots of antibiotics over 10 weeks on and now I'm weak all over, started sertraline anti depressants 5 weeks ago unsure if their also playing a part in this pain that's got worse. I know it's all a waiting game just hard waiting in pain and worrey of diagnosis.
I totally understand and my back pain is my worst and also my right side in general hopefully the respiratory appointment will help put your mind at ease. In the mean time have another chat with your doctor they may be able to help you manage the pain better in the mean time of refer you to a rheumatologist
Ok I didnt know if fibro everything was mirrored so was concerned with it being moreso joint pain in my right, thankyiu I'm planning on booking appointment for next week, hopefully seen bu respiritory soon, scared for that appointment cause I'm so convinced I met definatlet started with the infections just scared may be something scarier n now I'm all feeling weak. Tha you for your time x
I’m afraid that fibromyalgia is a strange beast. Anything, and everything, can hurt... all at once, or bits at a time. It also depends if you use one side of your body more than another - so if you’re right-handed, your right arm might be more painful, and get more weak, than the left.
I find that if I over-do things, my muscles do become weak - they sometimes shake with the effort. Also, the more pain I’m in, the weaker I feel.
Now, the spinal pain. I have found that a lot (I would estimate at least 75% if not more) of people with fibromyalgia have spinal problems - mine is prolapsed discs that press onto my spinal cord. So I would suggest a spinal MRI to look at what’s going on.
Regarding your chest infection, was glandular fever ever mentioned, or tested for? As it was quite a serious infection you had, it could have been enough of a stress on your body to kick-start your fibromyalgia. My doctor thinks it was glandular fever that expedited/caused my fibro, so there’s always a possibility that a huge chest infection could have been the causation of yours? Possibly - I’m not a doctor, so can only go on my own experiences.
I know it’s easy for me to say, but try not to worry about this. Worrying/stress only causes the fibromyalgia to worsen. Are you sleeping properly? Again, this could be due to the fibromyalgia - I’ve tried all sorts & still have a stupid sleep pattern.
Finally, just take care of yourself. I read that you have children, so this is easier said than done, but if you even just have 5 minutes to yourself, take them!!
Thankyou, yes I'm right handed so that may explain my right side alot more weaker. Chest infection tbh I went to docs end of oct said he could hear the crackles from infection had antibiotics doxycycline, 2 weeks later I didnt feel much better n they gave me doxycycline again, december I was told sounded like I had pleurisy but with all this going on my x Ray's were clear. I had lots of phlegm coming up in which I put down to 2 months of quitting smoking..
Msk said fibro but bc I'm convinced all this pain started with lungs(chest infections) I said I need to see respiritory!
My chest feels like its burning,under my ribs hurt,and i wish for one day I could experience normal bowel movements, I know I sound abit negative and I really dont mean to, I have stopped telling family the pain I'm in because I understand I'm saying it constant! But
If i bend down my neck and spine hurts too, making me think is my leg weaker bc their is actually something wrong going on with my spine serious.ALSO haven't noticed before but my right arm/shoulder is clicky anyone else got clicky joints
Thankyou I have learned to take 5, also i do believe of i dodnt have 2 and 3 year old i probably wouldn't be able to be as mobile as everything must still go on so I'm up and about.
Thankyou for listening
I found the respiratory clinic very helpful and incredibly thorough. I had chest pain, shortness of breath and fatigue so bad I couldn’t walk more than a few hundred metres without stopping. I could only walk at all on level ground.
I had breathing tests, an ECG, ( I’d already had a chest X-ray) and a full body CT scan. And blood tests—- I counted over 40 results. Absolutely nothing showed up as wrong. In fact the dr told me my breathing / lung capacity was 99% ( I was 61 at the time) which was unusually good.
All symptoms were put down to fibro. They’ve improved a lot but stress sets them off again.
Thankyou so much for this reply,that's fantastic lung capacity, mine was around 85.
I'm soon to see respiritory I hope and pray it all comes back normal I have done a breathing test at docs which was fine and 2 x Ray's what were clear.. I get chest pain and shortness of breath.. I didnt k ow this ould be caused by fibro.
Is it normal for my right leg to feel heavier than the other? Can I ask have you ever experienced spine pain? Thankyou for your time, I'm finding this site very helpful whilst waiting for my referrals and diagnosis, G
Spine pain, hip pain, knee pain, shoulder p........ you get the picture. It moves around.
I was really sure I was going into heart failure, had some sort of heart problem the struggle for breath was so bad. My legs constantly felt like lead weights were tied to them.
I tried all the remedies I could find online, none helped. Then someone posted on here about lack of enzymes causing failure to absorb B1. I checked about taking B1 and started on 2 a day ( just Holland and Barrett) Took 4 weeks to work but I improved 100 fold. Only set back I’ve had is deciding to move house and I’m sure the stress has caused a flare up.
• in reply to
I don't know about you maybe you're stronger than me? But even the thought of moving house turns me into a shaking, physical and mental wreck! xx
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It’s fast doing the same to me! I’m telling myself it’s just this one move and I’m never doing it again
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Good luck with it grab all the help you're offered! None of that independence business during a time like this! xx
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Thanks. Luckily have help from family and friends.
I have same problem as you throughout every single part of my body. However it’s extremely worsen in my both legs, over knee, under knee, On Knee, Calf, On hips and lower back are getting more worse. Unable to move from bed for 6/7 days. Cut down food still gain weight. Some days unable to hold tea. When is extremely bad in my whole body. You can imagine a person who always work around 90/96 hours a week and suddenly stuck in the house that seems like a real jock. This time last year I was in hospital for nearly whole month. It’s really painful however I always pray for all of us will get better soon and back to the normal life at least. Fingers crossed 🤞 won’t be long. Take good care and look after yourself
Hi Gg4l. I had so many referrals and tests before I was finally diagnosed by MSK as having Fibro (Nov last year - 18-24 months after symptoms starting and investigations starting). Like you had endless blood tests, I had 3x MRIs on my spine as my worst pain was there (now more hips and other joints, but spine still had some days) - MRIs did show a slipped disc and disk degradation but MSK said it was normal, slipped disc aside, for my age (41). I saw cardiology for palpitations and chest pain (all fine), ENT for tinnitus (still being checked, but so far I’m told likely all fine and not to worry), and various others. I get the clicks joints too, if always had some in my hands, but now im getting them all over really. As mentioned earlier it’s thought a particular “trauma” can be a trigger - physical, emotional, health - mine, I think, was severe flu (in bed for two weeks), at the same time as significant workplace stress and stress at home (moving house). Everything got worse in the weeks after that. With all the tests and all the symptoms, seemingly new ones all the time, it is very hard not to worry. I was convinced I had a terminal illness or something. But it seems all my symptoms ended up being Fibro related. It just takes so long to be diagnosed! But by all means get checked out with the experts, if nothing else, to put your mind at rest. In my experience you sometimes have to ask and insist on referrals or chases or suggest things to check or, even ask about possible diagnoses - my GP was very helpful, but they only have 10mins to discuss so many symptoms and issues, so only so much they can ask about.
It's so hard to say with so many symptoms - feels like every time you see your GP or other specialist and mention Fibro, there's a sort of knowing - "well, could be linked".....but there's nothing wrong with asking your GP about it and asking for a referral to ENT.
I'm still being investigated by ENT, and awaiting an an MRI (an Open one - my experience in the tube MRIs for my back was not fun!), but the ENT specialist did say last time that he's not expecting to see anything, and it could just be related to the anxiety part of my Fibro.
As in my other reply, so hard to say with so many symptoms........re: bowels, I do have IBS as one of my symptoms. I think it's well known to be a common one. I had a colonoscopy a little over a year ago due to it, just to be sure (all fine).
Yes,I have it all over plus many other conditions. I think you need to be referred to a rheumatologist, they will be able to diagnose you. Take care Lynne
I'm so pleased you have got family and friends, I'm lucky to have family and friends too. You will find tremendous help on this forum , they are all wonderful. Take care Lynne
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