So much pain and so little answers. - Pain Concern

Pain Concern

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So much pain and so little answers.

I've been suffering from wide spread pain for quite some time and have been though the mill trying to get answers. I was tested for fibromalagia and that was negative! I have health anxiety becuse of the pain and if the pain was manageable and bearable I could stop my anxiety! At the moment I'm in a horrific catch 22 and life really feels like it's pointless waking up in agonising pain and being told by doctors they don't know what it is, is massively frustrating!! The pains are mostly arms and chest but do spread to back, lower back and top of thighs! Yes I think the worst but I can't help that as I have no solid answers that this isn't something sinister :( has anyone else been in this position?

16 Replies

who told you that you did not have fibro.? its very hard to get a diagnosis. my daughter has it and is always talking about her chest pain and her arms like shooting pains she says and she has clicking of her bones as well as other things it was a rheumatologist that diagnosed her, as her doctor did not know what it was, i hope you find out what it is. and i also hope that you'v got pain relief. i know what you mean if you dont know whats wrong with you the mind goes crazy wondering what it is. i sympathise with you and hope that you get an answer soon, if you have not seen a rheumatologist then could you ask to be refered to one? love grace xoxoxo

in reply to grace111

Thanks for your reply, I have no form of pain relief as nothing works tbh. I've had oralmophine and tramadol and still no joy with relief :( it's horrible. It was my GP that put pressure on my fibro points and said he disagrees with the pain management team that I do have fibro.

It's all a nightmare at the moment and nothing seems to be getting better just worse!

I can relate to the clicking and pain your daughter has and feel for her it's not nice at all :(

grace111 profile image
grace111 in reply to

no thats not right. it was a rhuematologist who diagnosed her and its very hard to get a diagnosis not everyone has pain in those points all the time, although i cant understand why your not getting any relief from the pain, sometimes my daughter cant walk very far and has to sit down, this all came on her quite suddenly a few years ago and she thinks its because she had taken anti biotics and wont take anymore and she has asthama as well and has to take steroids sometimes, i hope you find out what it is. love grace xoxoxo

rosewine profile image
rosewine in reply to grace111

Strange you say about your daughter and antibiotics but I remember a forum member on another healthunlocked site doing a mini poll asking people whether they had been given antibiotics of the fluoroquinolone type before developing fibromyalgia. He gave a link to a site which explained a theory about this I think the link was quickhealthnotes.weebly.com worth a look.x

I just don't know why or where the pain is coming from, nether do the doctors hense they have come to a end of prescription pain relief. I need to see a specialist and get sorted as this is pretty much ruining my life. Just knowing what it is will help me massively as I can accept it and move foward :(

It's weird you mention anti biotics I've been on them quite a few times due to my gums. Very recently aswell and the pain has ramped up massively!

They put me on a brown inhaler as I struggled to breath yet there blaming my anxiety

What a mess :(

Hi caldzie

Sorry that you are suffering, not knowing is hard I agree. I have RA but before it was diagnosed (or even obvious what it was) I was very poorly and being investigated for all sorts. Very stressful and that in itself is bad bad bad.

Finding out I had (originally diagnosed as reactive arthritis) RA seemed like a huge relief at the time, although with hindsight...

Anyway, have you seen anyone apart from a GP and pain team? I would say you most definitely need a referral to a specialist, possibly rheumatology. Can you ask your GP (nicely) for a second opinion / referral? They are usually ok with that.

As grace says, and IME GPs are not the people to diagnose something like fibro or any other complex pain problem.

Another thing you could consider is looking into gut microbiome dysfunction. Sounds like baloney but lots of anecdotal evidence of folk changing their lives by changing their diet. Antibiotics are implicated due to the fact they wipe out lots of the good bacteria living in your gut, I hate the phrase 'leaky gut' as it's a term coined by the supplement / CAM industry to sell you stuff. It is not a medical term. However, it is a good place to start googling.

Don't think you necessarily have to spend money either, the general idea is to remove things from your diet / lifestyle that encourage 'bad bacteria' and replace with things that encourage the good. Replace 'gut dysbiosis' with 'symbiosis' if you like.

Food for thought.

Ade

Thank you for your reply I think I need to have a sit down and chat with my doctor. The last time I did I broke down in tears as the pain was getting too much and the worrie on top was ripping me apart. Having two sons and wanting to be the best I can for them in struggling massively just to even play with them or take them out!

It is strange you mentioned the stomach area as I do have a lot of pains around that area and was one of the reasons I had a endoscopy which was clear and lead me back to square one!

I will have a good read up on the points you made! Thank you

Jamie

PFKAAde profile image
PFKAAde in reply to

You're welcome Jamie (that's my son's name 😀).

I know what you mean about children and guilt. As mentioned I've got RA and also have had major back problems in the past couple of years meaning I can't walk, play football, pick up my daughter etc etc.

They don't judge you. They love you anyway. I know it pointless saying it, but don't cut yourself up over it. You no doubt do the best you can, as we all do for our children.

Take care.

Ade

in reply to PFKAAde

Thanks again ade!

in reply to

have you had a ct/mri scan?or even just an ultrasound of your abdomen?endoscopy only reveals things inside the oesophagus.stomach/colon.I ahve had abdominal pain for years and no diagnosis despite recogniseable symptoms -doctor s put down to IBS(or age /menopause- in my case-dont know how old you are) because they dont know what it is and even though gastroenterologist ruled out IBS they still refuse to acknowledge i dont have it and something more is going on.Ask to see a gastroenterologist .

like you i broke down in tears at the doctors (and they assume then "you have a mental health issue")because not taken seriously.I have just been on a course of antibiotics for urine infection and wonder if they made things worse.

no support from gp as one i just left told me "you dont have anything wrong" despite diagnoses i have had -i walked out the surgery in disgust when she said that.

seeing mine tomorrow fro all the good it will do as they arent listening,have photographic evidence of swellings and confirmation by gastroenterologist/gynae that I dont have IBS -yet still dismiss my symptoms./i am so weak and tired now all i do is walk my dog and sleep

in reply to

Sounds just like my GP he asked me to try IBS treatment which didn't help, at the same time took a stoll sample and bloods everything was fine! He was left scratching his head then booked me in for a ultrasound which again was clear this was awhile ago maybe 3 years back then the pains were painful but in hindsight not a drop in the ocean to the pains now!

One thing I've forgot to mention and just happened now was I have a area on my back mid left that goes numb / pins and needles regular for no real reason :/

Also same as you as I have been on 3-4 course of anti biotics with no results.

Also as the pains got worse I think I've been A&E 15-20 times since this all began! And guess what everything fine!

Your GP sounds just like me when I broke down I got handed diazepam, citalpram and tramadol and a pat on the back as I left :/

Felt like dropping him with a right hook and to be honest with the amount of pain I'm touchy as it is :(

Sorry for the long reply thought I'd share what I remember!

Really hope you catch your GP on a good day! And you break some ground with her. Hopefully your pictures will show something she's not understanding, mine just sees me for 5 mins and accesses my whole life from it and takes what I say as if I'm making it up... Because obvisly I am I'm depressed :/

in reply to

PLEASE LOOK UP FLOXY HOPE ON GOOGLE. I THINK YOU HAVE BEEN FLOXED. THE SOONER YOU CAN START ON A PROTOCOL OF VITS AND MINERALS THE MAIN ONE BEING MAGNESIUM THE BETTER. GOOD LUCK

in reply to

will do??

like you ive been to A&E several times with chronic pain only to be told its my age/menopausal/IBS and they then put in my notes "alerts" as though i was wasting their time as if i would spend 90 minutes on a bus getting there for no reason.they see your gp's notes and go by them.

i have told them from the day i found out my gp assumed IBS --in a letter he wrote to the DWP re benefits 18 months after stomach probs started and no mention of IBS-that i didnt have any bowel problems-absolutely normal.and they couldnt label me as obese based on BMI as weight gain was localised to abdomen and not general or diet related as hadnt eaten cakes biscuits etc for years so couldnt cut out what i didnt eat.

I sent in my reasons for attending to gp in advance of appt on their advice but when i did this for my previous gp so he would have advance notice of why i was there,i was accused of having "health anxiety" also because he kept telling me he didnt know what things were and i tried to find out for myself and put various conditions to him he took offence,im always been told drs have trained for years and have medical knowledge yet they tell me they dont know what things are-proven as they obviously dont know the symptoms of IBS.

i put in m y email to him-Myositis as told of by a friend-match ,my symptoms also.4 years ago i developed what looked like "bruising"around my eyes/nose.gp didnt suggest anything and told me to "wear make up".appalled by his comment and this sort of comment.non-acceptance of anything i told him destroyed my trust in him.so will see what tomorrow has instore.

slept 4 hours today after taking my dog to vets this morning.

Have you had any antibioctics in the past?

Hi caldzie,

I am so sorry about your struggles and pain. Having the hopeless feeling of never ending doubt and frustration if anything will change is a horror I wouldn't wish upon my worst enemy. My mother (CRPSmom) told me about your post and I wanted to help you in anyway that I can. What I can tell you is that what you are describing sounds like CRPS (Complex Regional Pain Syndrome) / RSD (Reflex Sympathetic Distrophy). But I am not a doctor so I don't want you to take my opinion/ observation as an absolute answer. I do however want to give you some possible relief for your pain. Some of the things that have helped me are warm therapeutic hot tubs with epsom salt, heating blankets, stim therapy machines, and a mirror box. The heat component really helps! I waited almost 2 years to try and use it because I am constantly overheated but it relieves pain, not for a prolonged amount of time but any relief is relief. The stim machines help pulse your muscles and nerves which sounds intense but after you are done a 10-12 minute cycle you feel much better than when you started- you can pick one up at any store like rite aide, cvs, Walgreens, Walmart, etc. the mirror box I found very helpful because it helps to retrain your brain and redirect that pain.

I hope this was helpful and If you have anymore questions Please do not hesitate to ask! My email is nfoleyyy@gmail.com

Good luck!

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