National Campiagn for more Costo Research to help sufferers!!

Hi Judith and Linda

I glad we are like minded regarding this issue. Whilst inflammation and pain are significant to this condition there are extended symptoms that just seem to appear from no where and as well described Linda,  both shifting pain and other elments just seem to start out of the blue.

Judith your right uninformed sounds about right as many consultants had they look at you blankly whilst you spin off tonnes of symptoms being experienced. Whilst I appreciate this forum I think more procactively this needs a higher profile.

I have been on LBC talking about my condition as well when the opportunity has arisen.

Yes Fibro is also does link with CC.  I am hoping to commence a  Change.Org petiton for further NHS to run a more research, quicker investigations for diagnosis adn treatment and support for us suffers.

Today I am off work due to a flare up I am besides myself with worry and limited as to who can talk with and turn to for help.

I need NHS and health services nationally to take this condition seriously.

Your contributions are appreciated.

Are any of you suffering with headaches/pressure of same of CC or weight loss/due to appetite supression?

Best

Elaine

There should be a standard range of tests done successively when CC is thought to be the cause. It just seems a too slower process of elimenation meanwhile your world becomes on stand still but  you cant afford to do so ie work and family life.

ECT/Bloods (including anti-inflammatorys)/ENT/heart and immediate medication support for pain management (not just ramdom 'try this?'

Hi. I totally agree more research is needed. I have days when I feel hungry but then just pick at my food I also have swallowing problems which is very scary. I’ve on sick at the moment but so worried I’m putting my daughter through uni and so worried about my pay being reduced. Like the rest of you I’m totally at my wits end. I’m waiting to see My rheumatologist but it’s been a very long wait. Hope you get some relief soon x 

Hi Elaine, I've just seen the long post. Unfortunately, costo seems like a symptom and not the main cause. Inflammation of these joints can be a result of physical strain, injury, viral infection or bacterial infection. Plus if it's part of fibromyalgia, CFS or ME, there is no specific inflammation going on as such. So I can't imagine that there could be specific tests developed. However, there should be more understanding of the kind of pain, more description, and better records of what kind of medication are likely to work given a patient's previous history of pain medication and illnesses -- that would be half victory!

As for support: I was off work for about 3 months and it was quite hard to get a sick note from docs because they had no diagnosis, just an ongoing investigation. What do you tell your employer then? Just acknowledging the condition that is very limiting would again be a very big plus.

As for appetite supression: ah I wish! Getting this sort of pain knocked me off my balance, and my love for cake and sugar addiction kicked in and gained weight rapidly. Now trying to get rid of it -- not easy if you can't exercise! -- But this is all a very different story. Hopefully this time next year I'll be able to boast about my miraculous weight loss against the odds. :-)

Hope you all feel better soon, appreciate the painfree moments!

Indeed Judith.

But surely the conversations as we are having and other fellow suffers need a higher profile?

The medical profession have in entitled this CC but what they now need to concentrate on is pooling together patient information of the breath of symptoms arising for individuals. Mainly these fourms are concerned with the length of time they will be experiencing this dreadful pain. Essentially a guide for patients for reassure there medical health is being taken seriously;

professional help and where to go; including all tests at the start of illness - this is so important as people go months feeling alone and distress with CC.

Supporting patients ie with certificates for work - as mostly practitioners say themselves rest is needed; Our experiences differ from person to person (this should be recorded as part of cert need for work surely).

sign-posting to outside of conventionally treatments if preferred;

Support groups patient can contact.

Access to patient training with living with long term conditions -

When the misery of CC comes along whatever provides a light relief is to true appreciated so was your cake fest!!

I concure the days of respite are so welcomed to feel normal for a few hours or days, months are to be cherised.

Healing wishes Judith and all our fellor fighters!!

 

Agree with all of the above, especially the "how long will this condition last" -- a few weeks I was told. How laughable!

Cake was not a good idea in retrospect... cold packs and olbas oil, and curcumin pills, yes.

Hi Linda & Judith

I have just posted a long post that appears to be in moderation and may not reach this forum. I do hope so as I believe it is very important to our cause and cant imagine why it would be deleted.

Best

Elaine

Hi Lindsey I’ve now suffered 4years I go to chiropractor for aqua puncture it really does help a lot also rubbing Olbas Oil into painful areas helps don’t over stretch yourself and no heavy lifting hope this helps you 

Hi Lindsay

sorry your feeling this way really. Seems were on health see-saw dealing with CC. The process of elimation is so wearying with this condition but please do try and stat strong. Early stages are simply awful but as a mother myself I know how debilitating it can be caring for loved ones and carrying out our daily routines.

I have to say arnica gel and ice packs can be benifical to easing the pain if you can tolerate cold. Sometimes I use voltarole instead of taking orally (if I have a head I will take paracetamol). Tiger Balm can be helpful.  Empson salt baths are apparently good for helping muscles.

But its different for each person. Are you able to keep a diary of symptoms and triggers. I wish I did but when seeing professionals its good have your references.

Linda's ideas good too.

Stay strong!!

Best