Hi everyone I’m new here, I don’t have a diagnosis or much support from GP so far, but I’ve been physically struggling for a long long time.
My body aches all of the time, my shoulders, neck, sternum, hips and pelvic area, lower back, knees, calves, feet and ankles. It feels like my arms and legs are too long and heavy for my body. I can’t concentrate, I struggle with too much or too many noises going on around me, I’m sensitive to car headlights, I feel trapped if people are hectic around me (I have 3 kids and it’s currently impossible to avoid), I feel clumsy and stupid and worn out.
My eyes often feel dry or blurry (I wear glasses already and have had my eyes checked)
I have depression and anxiety and have for years and find when I go to GP I’m so overwhelmed and desperate it all comes out wrong, I cry and they put it down to depression. Basically being told it’s in my head.
I get cramp and numbness quickly and easily, pins and needles. I feel physically uncomfortable in my skin. My body won’t do what I know I should be capable of with my physique.
I’m 35 and I feel 80+
I feel so fobbed off at the doctors and genuinely don’t know what to do. I currently feel insane and can’t regulate my emotions.
Can’t anyone relate to this and am I way of course thinking this could all be down to fibromyalgia or other condition. I’m so lost
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vmagpie
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Hello, it’s not you it’s finding the right doctor, have you thought of ringing round a few local surgeries and ask if any of the doctors take a keen interest in Fibro, I did find a great doctor but took a while actually from the same surgery but passed on by the nurse practitioner. but previous doctor really didn’t help for years , just gave me antidepressants and that was it, also are there any support groups near you when social distancing is eased so you could attend, I found two in my area , sitting over a cuppa, exchanging words might be what you need, also people might be able to advice you where to try, it’s surprising what you might learn as well as some company, you don’t have to be diagnosed to attend it’s getting that diagnosis to give you a piece of mind, I found mine online places, dates, times of meet ups. Just a thought take a close member of family / friend with you to an appointment, I did , it certainly helped me, don’t let them fob you off, being very down you need help and advice, it’s not in our heads it’s very real. I hope also it helps to read posts on the forum and chat here, good luck keep pushing xxxx
My heart goes out to you having been in a place like you before, please even temporary whilst you get more information about other surgeries is there anybody you can take to a doctors appointment where you are currently that will back you and sit beside you, I am currently 58 but took my friend she’s tiny and 61 but boy she won’t get fobbed off and will ask questions if need be to get things moving. I changed medication for anxiety /depression from citalopram to duloxtene it really did the trick for me and so much more happier and sole to cope with fibro(and unfortunately CFS, sleep apnea,) there are some lovely people on here to chat too. Try rest up the rest of today and pick up that phone tomorrow, baby steps I call them but would be good to go forward xxxxxx
I agree with Yasmintina, it’s all about finding the right doctor - one who won’t dismiss you if you cry or if a test comes back negative because it doesn’t fit wit their ideas. I was about to change surgeries when I was given an appointment with their new GP and my goodness, I’d rather wait weeks to see her then go to someone else. She took the time to listen, didn’t take my crying as depression but as frustration. She even asked my husband how he was doing or if he had noticed anything different. She has been a god send. As the other poster said, phone local surgeries to ask, take someone with you. Keep a chronology of your symptoms too, they tend to be less overwhelmed with information if there’s a time line to things. It can rule somethings out instantly.
Hi there vmagpie, so sorry to hear your situation but please know you are not alone, wither it be Fibromyalgia or something else; chronic pain and chronic fatigue are debilitating and we all here can relate.
First things first, Do Not Be Fobbed Off, you really need a diagnosis, speak to your GP again, explain that you are at the end of your tether and You Need to get to the bottom of the way you are feeling; you want a referral to a Rheumatologist.
You can only treat what you know, don't presume you have Fibromyalgia because your symptoms match up, the symptoms match up to many health issues. I would also enquire with your GP regarding a referral onto a Pain Management Programme, this may need done through the Rheumatologist.
I have been living with Hyper Mobility Syndrome(Chronic Pain from over mobile joints) most of my life, then more recently was diagnosed with an Under active Thyroid then a couple of years later Fibromyalgia, though I believe that the Fibro. had been with me for quite some time(undetected due to on going health issues). Don't mean to be intrusive, but have you had your Thyroid checked, it is a long process of regular blood checks until the medication regulates things, but might be worth checking if you have not already.
I think I can say confidently that I have tried everything over the years, with little & short lived benefit, but recently I completed Glasgow City & Clyde's Pain Management Programme(before lock down), I highly recommend it to anyone suffering any sort of pain, they teach you how to change your mindset towards pain, believe me I was so sceptical at first, but at the very first session, they made so much sense, I forced my self to go, it was a 12 week course, 2hrs a day, once a week; obviously courses will differ up and down the country; but definitely worth inquiring into.
For the time being, speak to your household and any support you have, explaining your pain, un-explainable sensations and exhaustion; seeking a little extra help for the time being. You want to learn to Pace activities, meaning breaking things down into bite sized pieces, taking rest breaks in-between. Making time for yourself is important(which I know seems impossible when you have children), but even just for 15-30 mins to begin with, use this time to totally relax, take yourself away and do a short guided meditation on You Tube(I find these really good), or even just go for an uninterrupted bath (get the kids involved, have them make you a sign which reads "Mummy's Time" for you to display where ever your sanctuary might be), uninterrupted whatever. Most importantly, stop being hard on yourself(and we all are, it's "a work in progress" not to be), it is frustrating when you physically can not do something which was an easy task 2 days ago, and just because you can not do or complete a thing today, does not mean you will not be able to do said thing tomorrow. Think about the tortoise and the hare, slow and steady wins the race.
Does heat or cold eases your symptoms, If heat, I find a dampened towel heated in the microwave is good for wrapping or draping(remember to wrap in something before applying in case too hot), If cold, Ice cube bags are good as they are easy to shape, I'd also wrap in something before applying to skin.
So sorry for rambling on, I do feel for you and I hope you feel some relief from your symptoms soon, even more so, I hope you receive a diagnosis soon, then at least you'll know what you are dealing with. I am confident you will receive some wonderful advice and support from the awesome people on here.
I have hyper mobile joints too, do you think it’s related? I suffer in my jaw sometimes but mostly caused dislocation in my knees and twice in one hip from age 10. I grew up with ‘growing pains’ into adulthood and it’s never really gone away.
The pain management course sounds worth looking into thank you. I don’t even call it pain much anymore if you can understand that, I’ve tried to have things looked into so many times through docs. Because I’m quite emotional, even more so at the doctors (due to a really bad experience with a GP at 17) I feel and probably behave like a total head case.
I’m thinking of maybe writing a letter to my gp ahead of an appointment, so they can address what I’ve described rather than me having to explain it ( maybe avoid getting too emotional)
I’m sure I’ve had my thyroid checked but I don’t remember having regular blood tests, I just remember being told it was fine after a test I had for something else.
I’ve recently started having baths with Epsom salts, it helps a bit. I sometimes use heat, but cold doesn’t really help.
Rhumatology you may have hypermobility syndrome or EDStype 3 my joints slip all time cant stand different noises n pain can be so bad in my shoulders i think im having a heart attack even went into hospital a couple of times with it before we realised it was my shoulder slipping i get overwhelmed so bad i move i feel like the world is boxing me in so move houses cities or just areas within a city my ten year old has had 7 schools including creches n nursary pain is a major factor with hypermobility and fibro you could have one or like me both ten years ago i got told i will end up in a wheel chair mainly due to hypermobility but im still walking slowly i use a stick outside cos the slightest hill up or down can throw my knee or hip out only partial dislocation but enough for me to kiss the curb it i havent got my stick, even with my stick sometimes, you need the specialist write the letter its easier than trying to remember when your pushed for time n the stress of being in gp. I wrote a whole reply on it below lol then read the rest of your post lol.
Before you go to gp next spend a day or two with your nearest and dearest writting down your symptoms your family may see somthing you miss, remork it into sentances then book a go double appointment a ten minute slot is no good if you have more than one symptom take your notes ask the gp to read it or read it to them but leave the notes.if possible so gp can reflect on them if he/she hasnt got time in appointment and tell them that your family helped you compile this its not all in your head once gp listens then you can start the testing ask to see a rhumatologist keep a copy of your notes you ll need em for any specialist you see if you get new symptoms or notice old ones you havent wrote down add them. Gos deal with symptoms you need a specialist to see the problem xxxxxxx good luck hope this helps xxxxxx
Good luck i think getting gp to properly listen in first place is the hardest bit once they start looking into whats wrong you ll feel better as you know somthings happening hope its a quick process for you for some of us it was years so be prepared xxxxxxxx
I was so very moved reading your story, l am so very sorry.
I have found for me the best way to approach my GP is to type EVERYTHING out on a A4 piece of paper, no tiny pieces.
Print out two copies and give one to the doctor, give the doctor time to read through your notes and then go through each problem one by one. Tick off each problem as you go along. Please try not to be put off with any ‘grunts’ or other noises coming from the other side of the desk. If l do not do this l always forget so many points that were very important.
I know that l always overrun my appointment time, l apologise of course. When I know that I have too many problems I will book a double appointment, when possible.
We are at times in very dark places and only you know how dark your place is, l used to cry at my doctors appointment, why l have no idea, maybe frustration.
I am now eighty one. Who cares, there is a job to be done and we all need to be sorted.
Take great care of yourself, l wish you well on your recovery which I hope will be very soon.
I get so desperate and my brain doesn’t function properly so writing it down would definitely help.
I phoned drs in desperation again today, I’ve been having Councelling for the past few weeks as really not been coping, she got concerned and told me to contact my GP today. First I was called by their mental health nurse, I was able to explain a lot to her and she wrote it all down and took it to a gp who has just phoned me. He is referring me to rheumatologist. Now I’m going to focus on writing out all my symptoms so I’m prepared, could be a long wait but at least the first steps have been taken.
Thank you for your lovely response. Look forward to communicating with you again xx
I am so sorry that you feel so bad. I was given my diagnosis just as we went into Lockdown and I felt completely alone and desperate. Luckily, the lovely people on this site replied to my post - it made me feel so much better knowing that I wasn't the only one. Take care of yourself - I hope you feel better soon.
Sorry to hear that, that must have been a really tough time for you. How are you coping now?
I’ve just had a positive call from my gp surgery and he thinks it could be a combination of hyper mobile syndrome and fibromyalgia and has agreed to refer me to rheumatology.
How did the process go for you? I’ve tried for years thinking all my aches are separate things, never getting answers and ending up feeling crazy. Xxx
Hi vmagpie. I'm so sorry to hear what you're going through! I had very similar symptoms as the ones you're describing and most of them went away when I had my thyroid treated. Hypothyroidism is a frequent culprit that can bring all the symptoms you're describing. If you haven't had your thyroid tested in the last few months, I would re-test, making sure you ask to be tested for TSH, Free T4, Free T3 and thyroid antibodies. The reference ranges for those tests are too wide so, if I were you, I would post my results in the Thyroid UK forum to get feedback:
Some doctors won't treat hypothyroid patients unless their results are way out of the reference range, leaving people suffering for years without treatment! People in this forum are very knowledgeable. They can guide you with your test results and point you in the direction of doctors who will help you. They usually recommend that you also test for levels of Vitamins D, B12, Ferritin, Iron and Folate too.
This can also help you evaluate your results to see if you are optimal:
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