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ME/PVFS help required please.

(15 Posts)
magso Wed 20-Jul-11 11:44:07

I have PVFS ( presumed ME not yet seen a specialist) for at least 2.5 years. I have slowly got better at pacing myself and was doing so well with fewer neurological symptoms. I think I am crashing. My wobbly wide legged gate/ extreme fuzzy brain/ achy limbs/ parasthesia/ dizzyness have retuned and I look and sound drunk again ( slurred speech/ mixing words)
I broke a tooth last week and now have a tempory filling prior to further work and a crown. I thought I survived the initial dental work fine and joined in a family - stroll something I cannot usually do. ( Last year I broke another tooth too and it set me back but then my asthma was much more brittle).
So could it be the dental work that has set off this crash and is there anything I can do to pull myself back? Also should I delay the further work ( since the temp is holding out so far) since it is also the school holidays imminently and ds ( sn) needs a lot of energy to care for - or would it be better to get on with the change from a mercury filling to a crown?
I have tried epsom salt baths which usually helps with the ache and muscle cramps. I have a reasonable diet ( although having to avoid seeds/nuts at present!!).
I also could do with getting expert advice but my GP does not know who to refer me to. The one listed ( on the ME website) for our area is a national service in London that has had some critism recently. I could do with something more local as travelling is so tiring!! Any suggestions on how to get help?

rockinhippy Thu 21-Jul-11 00:19:23

Hi smile

Sorry your dealing with all that sad - & yes

Ive a Dx of FM & ME amongst other things & in a similar situation as far as crashing goes - I can't type much as body isshutting down & my fingers have mind of there own right now hmm, so will hav et o be brief

Is there a Pain Management Clinic Near you??? they are more common, so there should be - not exactly ME or FM, but I have found my one helpful, probably more so in some ways than our ME clinic

or do you have a local Fibromyalgia clinic - check FMAUK for local ones - not ME but similar & will take ME patients as a lot of us have both.

When you say reasonable diet are you avoiding food chemicals - colours, preservatives, sweetners etc?? - these can all make us worse

I also find during a flare I become more wheat sensitive & have to be more careful with dairy

Epsom salts is good, but try adding aroma oils to your bath - clary sage, black pepper & lavender are all good

Spirulina is a good all round tonic with immune boosting properties & lots of pottasium & iron

hope some of that helps

rockinhippy Thu 21-Jul-11 00:20:11

should have been - YES - dental work will trigger a flare - it does for me at least hmm

rockinhippy Thu 21-Jul-11 00:26:02

& yes delay further work - you need to rest, with light stretching excersize or risk going deeper into a flare - I 've been a bit too cocky lately & didn't heed that same advice & pushed myself too far & paying with it with flare from hell ATM

also the weather - ours is intermittent storm, sun & rain - its a killer for us - whe are a sensitive lot & barometic pressure affects us toohmm

Have you tried Sauna?? or Manual Lymphatic Drainage?? _ I find they can help lot too - as does accupuncture - some pain clinics can prescribe that smile

magso Thu 21-Jul-11 09:00:31

Thank you rockinhippy. I know what you mean about your fingers having a mind of their own! I have some spirolina so will eat it! I have not trained manual drainage - I will look into it do you find it is helpful. And I think delaying the dental work till after the holiday would be wise. The holidays are already a worry - ds needs to be kept busy and is such a whirwind!!
I made contact with the local pain management/ME clinic at last! They said I would be suitable ( once diagnosed) and suggested a physician for my gp to refer to! They also were encouraging. It could all take some time of course. Help with pain management alone would be wonderful!

magso Thu 21-Jul-11 09:25:26

Tried I mean ( useless brain of mine)

rockinhippy Thu 21-Jul-11 09:46:04

Do you not have some sort of Summer School near you?? - I found a list on "NetMums - not that keen on the site itself, but do find it good on that sort of local info

Like you say the holidays are a big worry, I've learned its a good idea to plan ahead as much as possible & to give myself a break, whatever it costs, this year I've put my own DD in for a weeks full time Drama School & its very local, so she is thrilled & it gives me a much needed break mid holiday - other years she's done street dance - there was a long list of activities to choose from, some subsidised, so might be worth you checking your area on there smile

MLD I've found is the most useful therapy, gone in in pain & come out 95% better & it lasts for a while too & helps you sleep properly, which again helps - shame it doesn't last forever, but if you can afford it, its a great boost - google for approved clinics - it is recognised medically as my old therapist used to work for the NHS with Cancer patients part time too - it basically clears the toxins & excess fluid out of your system smile

Theres also a brian boosting supplement called nurozan, all brain vits minerals & herbs in one pill I came a cross it in a student mag, but its great stuff, again you'll find it in boots etc.

Also keep in mind that there can always be something behind your ME symptoms - if your instincts tell you that, keep on pushing & don't get fobbed off - after over 8 years I've had some luck in recent months - 1 down to a new GP who sent me for a blood test which confirmed I had H pylori stomach infection - I've had treatment & its turned out mmy constant sore throat & croaky voice, along with other symptoms were actually down to that - NOT ME or FM as I've been told for years - I can also drink beer again & its generally made a big improvement to a lot of things

The other came about as in recent years I've been getting recurring Lymph gland infection in my neck, excruciatingly painful as it was pressing on a facial nerve - this is meant to be a VERY rare infection - yet I kept getting it again - again fobbed off on MEhmm - I had a flare up at my last ENT Check up (Chronic Sinus Disease DX toohmm - I mentioned it by way of explaininng myself as I was on morphine for the pain, so not very together - thankfully ENT Doc sent me for a scan of my neck & jaw - he was shocked it hadn't been done before hmm - came back that I have a pocket of infection in my jaw bone, nerve & tooth root left over from a botched up wisdom tooth extraction some 20 plus years ago -

I've now been passed over to another department & waiting on surgery to sort it out, ENT & Maxillio specialist BOTH think this is not only the source of the gland infections, but the Sinus infections I;'ve had problems with for years & quite possibly my chronic persistent headaches too - its going to be interesting to se the difference it makes

in short I've spent years living with 2 chronic infections & they blamed ME for my being so knacked hmm - not expecting a cure as such, but the stomach infection being cleared HAS helped me a lot, so I'mvery hopeful

So keep that in mind as far as diagnosis goes wink

hope you are having a better day today smile

magso Thu 21-Jul-11 11:10:42

Thank you. Very thoughtful to think of summer activities Ds has sn (learning disability with autism). We are allowed a max of 6 session in the sn play club in the summer so so I booked him in to the most active sessions, and he will also go to our village out of school club ( its ms but they are brilliant with ds). I have squirred away some new DVDs and lego too! Dh will be away for 10 days and ds has a night respite organised during that time. I love him dearly but his limited understanding makes rest unlikely!! I have experience with blaming everthing on one condition - what with ds autism and my asthma!

Your experience is interesting - how awful for you!!I hope the new specialist can get it right for you. I have chronic sinus infections also ear throat and lung problems. I saw ENT many years ago but was diagnosed with tinitus ( the least of my concerns) and sent away. I also get chronic tooth/ jaw pain - which is assumed to be sinus related. Perhaps time to investigate again! I saw cardiologist ( kept keeling over) but apart from the fast heart rate all is well.
I will look into MLD ( should remember that set of letters as DS has mod/sev learning disability shortened to MLD also) Thanks.

rockinhippy Thu 21-Jul-11 11:26:54

You might be surprised, the summer schools we looked at were all open to SN kids too - our friends 1 with a downs boy & another autistic likeyourselves have put them in for a week too - so don't let DSs SN put you off looking at them

I've had all the heart tests too & thankfully clear too - you might find googling the Automotive nervous system interesting - makes a lot of sense as regards the problems people like us tend to have

CFSKate Thu 21-Jul-11 11:38:31

I think if it was me, if the tooth is not actually infected or rotting, just broken, I would delay the dental work if possible.

This research on worsening of Alzheimers after surgery was in the news last week. Prof Perry is also a CFS researcher. and featured in the Daily Mail here

"The first stages of this type of dementia make the brain abnormally sensitive to the inflammatory proteins that the body produces to promote recovery, triggering severe Alzheimer’s.
The most significant of these proteins is tumor necrosis factor (TNF), a naturally-occurring substance that plays an essential role in the body’s immune response and the ability to recover from what doctors call ‘assaults’ on the body (bacterial or viral infections, injuries, surgery or heart attacks). It works by inducing ‘sickness behaviour’ such as a lack of energy, low mood and inability to concentrate.
Indeed, drugs known as anti-TNF blockers, already in use as a powerful therapy for rheumatoid arthritis (RA), could prove to be a key weapon against Alzheimer’s disease.
Scientists in the U.S. have recently reported research showing that people with arthritis who take these drugs have a massively reduced risk of developing Alzheimer’s disease — ‘with one drug in particular, etanercept, decreasing the risk of developing the disease by 70 per cent’,"

Now back to CFS, TNF seems to be relevant here too. There was a successful pilot study of treating CFS with Etanercept (Enbrel) back in 2000 by Lambrecht but I think it was not followed up.

It's not easy to get Etanercept, but according to wikipedia, "TNF or the effects of TNF are also inhibited by a number of natural compounds, including curcumin (a compound present in turmeric), and catechins (in green tea)."

In the really long ME thread, I've posted about XMRV - there is this research showing that CFS patients who are XMRV positive also have increased expression of TNF

In the Mail article on Alzheimers, it says "The scientists say animal studies have established that the abnormal proteins (known as amyloid plaques) that start to accumulate in the brain at the onset of Alzheimer’s disease prime the immune cells in the brain to produce excessively high, and therefore dangerous, levels of tumor necrosis factor in response to an infection or injury."

I don't know what it means, but I do remember seeing amyloidosis in CFS research before in Kerr's study of gene expression

magso Thu 21-Jul-11 12:10:16

Thanks CSFKate. Tooth has a temporary filling but needs a crown as it is unlikely to survive long. (I have broken it before - even my teeth are falling apart!!) I will delay treatment till after the holidays if possible. I have somehow lost the me thread!
I strongly feel it was the underlying ?CFS ( and not resting when I felt awful) that caused the pneumonia and resulting worsened asthma not the other way around! I suspected something was wrong (perhaps mild CFS) before the pneumonia but that that has worsened everything.
I also wonder ( digressing somewhat!) about oxgen therapy. I was on o2 for 10 days but my O2 sats really did not start to improve for a week ( they are still a bit below normal). I have read that o2 therapy is not helpful in CFS unless CO2 is also upped. Of course I had to be on O2 to live but is interesting I wonder if there is a metabolic problem with perfusing tissues despite a normal heart and lungs. My symptoms ( keeling over, getting exhausted quickly, exersize intolerance, dizziness poor o2saturation would normally be due to either lungs or heart not worknig well - but mine are working fine.
The TNF link is interesting if somewhat scarry!

chocaholic73 Thu 21-Jul-11 13:16:44

Hi Magso - I have read and been told that adrenaline based anaesthetics/local anaesthetics (sorry don't know how to spell today) can aggravate ME. Dentists apparently do have non adrenaline based ones if you ask, so that might be worth bearing in mind. My 19 year old DD who has had ME for 4 years has made good progress with the Perrin Technique which is a specialised form of lymphatic drainage carried out by specially trained osteopaths. Regarding specialists, good ones seem to be a rare breed, I think I know which service you mean ... it's a problem with many medical people still viewing ME as a psychological illness. If you want to talk more about this via PM please do message me.

magso Fri 22-Jul-11 20:31:57

chocoholic thank you so much. It is obvious that my gp group practice and the nhs/ nice in general regard me/cfs/pvfs as a physchological problem. This has really been most unhelpful!! Dentist is aware of my problem with the usual anasthetic ( I wasn't too well last year frightened them more than me - I am accustomed to passing out!!) He now uses an adrenalin free one whatever that is and I was fine - breathing held up fine. I will pm you ( not today am too tired!) but am very interested in the Perrin MLD.

CFSKate Sun 24-Jul-11 08:44:54

magso the big thread is here

chocaholic73 Tue 26-Jul-11 14:21:50

look forward to hearing from you Magso. Glad your dentist knows about the anaesthetic issue - at least that's a good start!

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