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does anyone using this forum have joint pain but none of the other symptoms of fibro (ie the fatigue, muscle pain, headaches etc?)

lorib34 profile image
26 Replies

I developed joint pain in my fingers wrists elbows toes ankles and knees almost overnight last year. As a nurse I automatically assumed it was some sort of post viral arthralgia as I had had a lingering sore throat for two months previously. My blood inflammatory markers were ok (no rheumatoid arthritis thankfully) but I was basically in agony and could hardly walk or even lift a kettle. I have no fatigue (holding down a 48hour week) and none of the other symptoms which seem to be an intrinsic part of the condition - I only have the strangest pain in my joints which I can only describe at times literally 'getting on my nerves' as sometimes the pain is not only right inside the joints themselves but also a tender, burning, tingling sensation. The palms of my hands become roaring red and the veins bulge unbearably. (the condition erythromelalgia could be the redness/vein thing but this does not cover the joint pain. (I discovered that term on google that a few weeks ago) My gp is sympathetic but at a loss as I have continually told her that I don't believe it's fibro and perhaps she is humouring me because I am a nurse. Anyone with similar experience or advice /answer for me? I just don't feel the picture 'fits' fibro but at this point I am past caring about the label and more about what might help me have less pain. I don't want to spend the rest of my life munching my way through painkillers and low dose anti-depressants (I do not feel depressed or anxious; I am just sick of listening to myself moaning) I am even now managing to moan in writing and that's ironic as my fingers are sore typing this!!!

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lorib34 profile image
lorib34
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26 Replies
Jackieblu profile image
Jackieblu

Hi lorib34 it is so frustrating when you have things going on that you cant quite get your head around! I have bad pains in my fingers,forefingers to be precise painful knuckles and awful burning pressing in the palms of my hands,really weak wrists aswell.I get really painful ankles too,feel as if they could snap of at times! I'm no expert but my take on it could be is that Fibro has a lot of symptoms that we all don't display,it's just a matter of trial and error! I've learnt loads just being on this form,answered a lot of questions that I had! I've also got osteoarthritis aswell as the Fibro and have had it for ten years now! I do get the fatigue but then again I could be up all night feeling totally wired! Sorry your having such a tough time but you hang in there my friend! Sorry I can't be of more help to you! Best wishes Jackiex

Walnutwhip2 profile image
Walnutwhip2

Hi Lorib34

I too don't believe this is fibro, I developed pains in my fingers, thumbs, wrists, forearms, shoulders, hips, knees, ankles & toes, so I know how your feeling.

My pains the call a fibro flare started 6 months ago, the pain came on suddenly & is still here.

I am unable to keep my job as my pay is due to stop.

I don't have any answers for you I'm sorry, but if ever you need to get it out of your system email me, if you want to, just answer this & I will give you my email.

lorib34 profile image
lorib34 in reply to Walnutwhip2

so sorry to hear how crappy things are for you. Is your doctor or specialist able to offer you any alternative pain relief? I know basically nothing worked for me last year when it all kicked off. Hope you have a supportive family around you. PS What age are you?I am 44. I am beginning to wonder if that has any bearing on it... menopause approaching etc. given that the majority of fibro sufferers seem to be female. I am afraid as a nurse I have been very sceptical of fibro up til now as I have always believed there MUST be a measurable/scientific way of diagnosing an illness ie blood tests/x rays . fibro to me was a made up term by the medical field to lump together people who had nothing else to think about except their own aches and pain. WHAT AN IDIOT I WAS. THIS ILLNESS IS LIKE NOTHING I CAN EXPLAIN TO SOMEONE WHO DOESN'T HAVE IT. A NIGHTMARE BECAUSE WHILE YOU MAY LOOK WELL, INSIDE YOUR JOINTS ARE IN TATTERS!!! thankyou for your response. It certainly has helped to talk to people who know how sore and frustrating this can be

Hi

I also had a long bout of exactly the same symptoms you are describing and also did think it was post viral - perhaps it was, nobody can know everything about what happens to the body. I decided it probably was fibromyalgia because I also then developed extreme tenderness at many of the non-joint fibro points ie either side of the collar bone and other places. I now find the symptoms only flare up when I'm stressed but don't realise it, then the symptoms come and if I have a good cry about things I find they ease. I don't pretend to understand exactly what happens but I do know that for many medical problems not everyone gets all he symptoms. Now rather than trying to find out what is wrong I simply try to do what's best to ease the symptoms.

I hope your joint pains ease.

Suexx

michaelb62 profile image
michaelb62

Hi lorib34,

I was also a nurse and my problems started with knee pains that just got worse, it then went on to other joints I had surgery on my shoulder have had a number of ops on my knees one of them has been replaced but my hands are very bad and my fingers I have never had what they call the trigger points of fibromyalgia but have suffered pain in all joints I have found it very hard accepting that it is fibromyalgia and have had it for over 25 years and the pain is getting worse and more joints are being affected. I have osteoarthritis as well but that seems to be ignored most of the time and everything is put down to fibro i then get very frustrated over the whole thing. Because you never get anywhere if i go to the dr's with a problem its always put down to fibro. My Dr will not refer me to a consultant as he says that surgery is not the answer even though the knee replacement i had done (privately through my ex husbands insurance because i was too young for NHS) has never been successful i have spoken to a lot of people who had to have second knee replacements because the first was unsuccessful but i can't even get past go. I demanded that i be referred back to see someone a couple of months ago after reading about a man who was having his ankle amputated because of the pain. So my GP said he needed new x rays first which i went and had done i went back to see him and had my hands injected with steroids because i insisted the left one is now pain free for a while the right is still bad but one out of two isn't bad. He gave me a copy of my knee x ray report but i don't think he has referred me to see the consultant. When doing the steroid injections he commented that it was only putting a band aid on the problem so what is giving me more morphine pills or other meds that don't work. So i do understand where you are coming from I have read so much about fibro over the last 25 years but sometimes i think it does become a label to some dr's as some believe and others don't and make you out to be a fraud just let them live with the pain for a while and maybe they might understand what a day with it is like. I hope you get the help you need and continue to be able to work I would love to go back to work but there is nothing i can do as i cannot stand for long, sit for long or even write or type for long because the pain is in every joint. I am trying a juicing fast at the moment as i have read so much about it helping lots of different illnesses including fibro and arthritis so i look at it that anything is worth a try so eliminating all foods except for fresh fruit and vegetables juiced i'm on day 9 now and although the pain hasn't gone i have lost some weight and no bloated feeling from the drugs.

lorib34 profile image
lorib34 in reply to michaelb62

thanks for responding... I hope you get some respite from the pain.sounds like you have had a dreadful time. don't give up trying anything which might help. keep in touch x

michaelb62 profile image
michaelb62 in reply to lorib34

thanks for your good wishes i hope equally you don't get any of the other symptoms i think having constant pain is bad enough without other things on top. I have had the depression that goes with it which i have been told by some is the depression causing the pain but never believe that one as i know for a fact its the pain that causes the depression the feeling that you are no longer useful and don't sleep etc the vicious circle which is so hard to break. I try to keep my mind occupied but spend so much time on my own that it gets quite lonely as i am now divorced and all 4 of my children are grown up and left home. You take care hope you find things that helps your pain. Take care x

lorib34 profile image
lorib34 in reply to michaelb62

know exactly what you mean Michael about the pain leading up to the depression. I consider myself to be a relatively up-beat person normally, but at its worst last year , I quite literally woke up just wishing it was bed time so that I could take a load of my meds and get back into bed. (I was forced then to take off work and only returned after 2 months because I was dropping down to half pay and a massive personal loan I had taken out still needed paying each month). It was a night mare being on my feet all day. It did make me realise though that we all take good health for granted. try to keep your mind and body active and keep in touch. thanks to you and everyone who has replied to me. I really have appreciated it.

michaelb62 profile image
michaelb62 in reply to lorib34

you are welcome just try and take it easy there are a lot of different aspects of fibro and different people have different symptoms its very complex but if you have a good dr who believes in it and knows about it that is good. I was medically retired from nursing as i just could't do it anymore which was tough as it was all i ever really wanted to do. The standing around and being on my feet just made the pain in my knees so much worse its only now years later that my hands have got really bad and i can't lift anything, even struggle to open a bottle of milk. Take care and take it easy when you can

boudle profile image
boudle

Hi..that is how mine started and it was quite a few years after suffering from the pain that gradually the other conditions started to appear. I know some people only have some of the problems associated with fibro but now i seem to have them all. Hopefully yours won't progress any further xx

lorib34 profile image
lorib34 in reply to boudle

thanks for the comment. although that might indicate I probably have fibro, at least I have something to go on. articles and literature I read always seemed to list all of the other symptoms as well so I have been assuming I didn't have fibro. good luck. I will keep checking the forum and will let you know about anything I find out which might be of help to the rest of you guys... PS today is a good day. pretty pain-free at the moment. What a weird illness!!!

boudle profile image
boudle in reply to lorib34

It does seem strange about the nurse thing as i was a nurse aswell !

A lot of people in here are nurses strange that, me too,

I have pain in my hands knuckles and fingers are always

Stiff.

for me I think it's the ageing process but it could be fibro.

lorib34 profile image
lorib34 in reply to

strange bout the nursing thing isn't it? Perhaps the years of lifting/pulling and hauling and being exposed to all manner of bacteria/viruses predispose us more to the illness. Dear only knows- have you had hand x-rays done? perhaps you do have a certain amount of osteoarthritis as well?

lorib34 profile image
lorib34

Thanx for the reply jessam. everyone has been so good . don't think it's osteoarthritis though as pain came on overnight and x rays taken last year were normal .I posted the history as you saw but didn't mention that symptoms improved over winter and at one point I thought that whatever it was had all but 'burned itself out'. then as the warmer weather came, symptoms returned with avengeance. The eryhtromelalgia fits in with the red hand/ bulging veins but doesn't address the pain which is so very joint specific I still cant get my mind quite fixed on fibro as a diagnosis. what has your experience of fibro been? Does it have any similarity with mine.

overit profile image
overit

Wow!! finally found someone with similar condition. I have not woken up pain free for a little over two months now. It started with my right shoulder and my GP gave me pain medication. No relief, so then had a steroid injection which got rid of the pain all together. Just when I thought it was over, a couple of days later my fingers started to swell up of a morning (very painful). It then spread to my wrists and ankles at which point I returned to the doc who referred me to a specialists. A few blood tests later, urine test and a scan led the docs to the conclusion that I may be a virus of some sort but they are not sure. It has since spread to the left side of my body effecting the same joints, ultimately leading to the left shoulder. Not arthritis, hep a,b or c or any mosquito type disease. Really do not look forward to waking of a morning as this is when it is worst and I even have troubles walking down the steps because the bottom of my feet kill. Hoping it is a virus that will eventually leave the system otherwise as I already am I will have to get use to the pain. If you get any glory PLEASE!!!! let me know.

sakib profile image
sakib

hi lorib34. I am 25 years old and for 5 years now i have joint pain. I have no fatigue, muscle pain, headaches, or inflammation. The onset of the pain would come overnight, usually after a day of moderate to high physical activity (like football). For example, last year i was running one day, walked home with a very slight pain in one ankle, all was fine, and when I woke up the next day it felt like it was broken, I could barely walk. Right now I can walk but I can't even consider running. I have similar pains in about 10 other joints over the last 5 years. Always over-night onset and permanent pain after that, currently all 10 spots hurt. Nearly all blood tests indicate that i am completely healthy so doctors have been telling me it's all in my head. In the last few months I did a bone scintigraphy showing hot spots near 2 of the 10 joints I feel pain in. I did 2 MRI's: in one joint it shows nothing even though the joint is painful, and in the other it shows cartilage damage in the painful area. The only blood test that i have done and that showed anything was Circulating Immune Complexes CIC: 195 IGG and 222 IGM with reference values 130 and 100 respectively. So basically so far tests show that there is something wrong, but no doctor yet had an idea what exactly. If you haven't done a bone scintigraphy or MRI or CIC maybe it could help you come closer to an answer, I don't know. Also, a bone scintigraphy can show you that there is something going on with your bones when an x-ray fails to. Hope this helps you. Also, if anyone reading this has any idea what could be the problem in my case, please let me know, I would appreciate any help.

trekster22 profile image
trekster22

Have you been tested for hypermobility syndrome or elhers danlos syndrome?

andymontop01 profile image
andymontop01

I know this probably won't be a long term solution but for an immediate possible remedy I would try this: puraz.com/joint-pain-treatm...

This worked very well for me in the past, offering almost immediate relief. It might help you until you find a long term solution!

spnplgrkenny profile image
spnplgrkenny

Lori, I realize it's been 3 years since you posted this input, but I would love to know what you discovered since It describes perfectly what has been going on with me for 5 months. Any help would be greatly appreciated.  Thank you!!

JudyJames profile image
JudyJames

Yes I was also dealing with this same situation.

akshayv2 profile image
akshayv2

hi,

I experience foot pain pretty constantly and have struggled to find shoes that would help me alleviate the pain. Well, i have to say that I have found them. They fit well. They have reduced my heel pain as well as my fasciitis symptoms. I can walk much easier and longer now . So happy I got these shoes! orthofeet do the job!

akshayv2 profile image
akshayv2

My plantar fasciitis is so much better and I felt the healing almost immediately. I say healing because with me using the inserts my feet are feeling so much better even when barefoot. I can get out of bed and walk in the morning with no problem. For over a year I was trying all sorts of inserts at the drug store and went for therapy, but no real change. Orthofeet inserts worked right away. I have had them a month and I ordered a second set just so I won't be without them. I also got the sandals which I love too. I use them as slippers. Maybe you will come out with slippers, I hope :)

akshayv2 profile image
akshayv2

I have heel pain and need arch support for my tired feet. I first wore orthofeet shoes around the house for an hour or two at a time, as suggested. This past weekend I ventured out to work my daughters Girl Scout cookie booths. I was on my feet 2 hours straight and my feet felt great.

kneepadsguide profile image
kneepadsguide

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michaelaen profile image
michaelaen

hello, what I think could help is this website biomag-medical.com/arthriti... where you can find more information about pain of joints that could be useful in some way

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