Thought this was an interesting read

Thanks Emis

Thanks Emis for sharing.

Yes i think there is a specific disease that is not fibromyalgia which i class more as a symptom of something that possibly just hasnt been discovered yet. A new immune disease or just not the typical lupus, RA etc that shows up on blood tests. As ive said before i and lots of people on here havent had ALL the tests in th world so they cant for certain say we dont have something that there is alredy a name for. Its suprising how close fibro symptoms are to arthritis or lupus and alot of other things, most things involving immune respone, it just misses some of the extreme symptoms like joint destruction in RA for example.

 

I so agree Charlotte regarding fibro being a 'symptom' and not a 'disease' in itself.  My doctor and I agreed on one point - that giving me a so-called diagnosis of Fibromyalgia wouldnt kick up any different treatment options to those already offered for any pain syndrome, ie all the same meds already on offer.  So far, I've been through the usual round of referrals, ie neurologist, rheumatologist, MRI, blood tests, etc etc., and the only thing that came to light was a slight reduction in the discs in my neck but apparently not sufficient to warrant further intervention/surgery etc presently and unlikely to cause pain in the soft tissue of both arms and legs, so back to square one.  I shall definitely push more about immune issues when I next see the doc.

sounds just like my referral pattern and I also have slight disc degeneration, bulge in c5/c6 and a pineal cyst but they told me neither were causing my issues. I suppose anything into the spinal cord can cause lower body issues too but there is a certain pattern with neck problems that they treat and it's usually the tingling/numb arms. Anything outside that perimeter they say it's not the neck. I had physio for my neck also and it just aggravated, certainly didn't help. I have had a couple of dodgy blood tests but on repeat testing they have been ok. Think I had elevated ana at one point indicative of autoimmune disease but it was ok at later testing.

I find it crazy they can put man on the moon, create robots and all these super amazing things and yet they can't find a connection between us all or a cause for all this rubbish! Or even an effective treatment for pain in general!

I so agree! GP's are essentially symptom treaters.  If it's not specific and/or terminal, they just throw stuff from a predetermined list of remedies just at the symptoms and hope we'll either recover or drop off this mortal coil.  I watch interesting documentaries on how they can replace whole sections of the body, artifical organs, cure previously untreatable maladies, yet a "simple" but so debilitating pain syndrome and they cannot be bothered to find cause or effective treatment.  It's very frustrating - I and many others often get to the point of even wishing for something more serious to be detected just so that we know WHY we suffer so much.  Telling me I have Fibromyalgia (fibro - fibrous tissue, myalgia = pain) is stating the bloody obvious, I KNOW I have tissue pain, now tell me why and help me overcome it.  It's like telling someone with skin cancer they have a pimple but they dont know what it is.

That's all so true, it's so frustrating, I've wishes so many times for my thyroid to show to be wrong or something that gives me solid scientific answers and more importantly a tried and tested treatment!

My partner calls GPs the man with the phone book, essentially they are useless they just have the contacts they can refer you onto if they feel with their limited knowledge that it warrants it.

I'm due to have surgery on my knee soon to remove cartilage and I saw supervet on to the other night scoop a minute bit of cartilage from a dogs knee, regrow it in his practise and put it back in, from that point the cells were activated enough that they regrew naturally in the dogs knee and he grew back the cartilage he needed, it makes me wonder why if the vet is doing it is it not available to people! I assume removing cartilage long term will lead to arthritis of sorts.

Perhaps we should all go to the vets for some cutting edge treatment and not the Drs!

Hi Charlotte;  I am not wanting  to upset you/make things worse in your mind..........but when you have this surgery to "remove cartilage", is the surgeon going to "replace with artificial cartilage/absorption", as if you have no cartilage, it will be like OA in that you will have bone rubbing on bone, and this in itself will cause more pain/problems............hoping that the surgeon is going to ensure this does not happen?...........Bron

Hi Bronwyn,

As far as I know they are just removing part of the meniscus cartilage , They have not said anything about replacing it with anything else. I assume osteo will be a result of that later on if it's not already present. I haven't actually got to speak to the surgeon yet so haven't had much information but from what I can see online they just take it out.

I have been worried about the consequences and as I also have a throat and neck pain and they have to incubate you with a tube down your throat, plus I don't know how my body will cope with the general anaesthetic but I'm stuck between a rock and a hard place. My knee has been mildly swollen for the last 13 years and although it didn't really hurt before the last 3 years it will periodically swell so much my feet have gone numb and it's also painful daily now. They said its in a grey area meaning there is no blood supply so it won't heal on its own.

evening Charlotte;   yes, it seems that you are in a place where there is no choice but to remove at least some of the cartilage, if the swelling is pressing on nerves/venous return............as for the Intubation, please explain re your neck issues........this I did when speaking to the Anaethetist before going into the theatre (had shoulder surgery a few years back,+ hernia repairs six months later.....even when having my hyster in 2005....all while having Fibro and OA etc).....he and I talked about everything, including the positioning of me on the table, and we agreed that "sitting up while intubated"  would be easier on my neck etc........he ensured that I had the Correct pillows and hot packs/support bags for neck so that it didn't cause me any real added discomfort............you may also be able to get the nursing staff to bring you their hot packs while in hospital, as I asked each time I had pain/stiffness in neck/shoulders..........they had to use their own due to WHS reasons, which was fine by me......also, please ensure that the nursing staff know about your condition/s, and "don't be afraid to say you have pain (even if you have to say/lie  that your knee is causing you pain.)........good luck, and please let us know how you get on.....................Bron

Thanks Bron, yes i will speak to the anaethetist prior to the surgery, i did try speaking to the Dr but he didnt know. How did you find the after effects of surgery, did you recover ok. I am in 2 minds whether to get it done or not, i still have time to cancel, i was more worried about the long term effects on my lower back and hips by not getting the knee sorted as i over compensate a bit and they get sore too. The actual knee pain i could live with forvever as its not too bad and in the scheme of the other pains its a drop in the ocean. Just the functionality would be nice to have back.

 

Hi Charlotte; I can understand your thought re further damage to back and hips, for yes, we do tend to weight bear on other joints when one is sore..................so I think you are the only one who can make the decision of "whether to have the surgery or not"...........am wondering now, though, have you tried physio on back and hips, along with knee, as they maybe able to lessen the Over-usage of back and hip joints, and show you some exercises to lessen the pain/stress  on these joints?.............I assume you have tried using an aide (walking stick) to carry the weight bearing of knee?....if, as you say, you can bear the pain of the knee, but worried re the other joints, more, then I would really be thinking re the surgery, as it will take a good few months to recuperate   (it took me 12 months to get over shoulder surgery, and about same with hernia repairs,) for as our nerves are already Over-sensitive, they have to be included in the recovery plan.....am not saying 12 months for knee, but it will take longer than someone having knee surgery who doesn't suffer from Fibro..........in answer to all, I would probably be looking into ways of helping cope with back and hip pain, and use a stick to weight bear with...........give it a few months and see how you progress..............if still feeling that "Yes" the surgery is needed, then do so?..............Bron

Hello, I hope you are well, I just thought I'd let you know I cancelled my knee op. I read some reviews from other people who had it done and many said they were in worse pain with worse mobility issues in thier knee. That coupled with the fact that as I distrust Drs anyway and more importantly the fact that after any medical treatment they usually wash their hands of you even if things are worse I thought I would just try and keep the knee mobile and deal with the pain.

Thanks again for making me question things as I already had a bad feeling about it and I think I have made the right decision.