Anyone with Fibromyalgia?

[Saltire]

Have you tried acupuncture? Did it work/help

[RockinD]

Did somebody call?

[TheGonnagle]

It's always a worry when they add other drugs into the mix isn't it? I suffered with tonsillitis which kept causing renal flares so last June I finally had my tonsils out (ouch). It has made such a difference to my levels of general health, no more sore throats every 3 weeks etc and I'm far far less tired, but they kept me on steroids throughout the period to counteract all the extra inflammation and also the drug cocktail which would probably have caused problems otherwise.
I also found childbirth to be a massive cause of problems, add to that the drugs for an IVF conception! I just blew up like a balloon and didn't go down again for 18 months. I actually got my EDS diagnosis because of the IVF. The genetics team at my hospital flagged it on a routine case check (my husbands infertility is genetic). I'm glad they didn't find it earlier- not sure they'd have allowed the treatment to get dd!
I do find that my protein loss escalates before my period, and I get the histaminey flushes at this time of the month too.
I would love to be able to join the dots with all this- I can't believe that it's just coincidence to have multiple immunological problems and them not be related, it just seems so unlikely.
Maybe we could keep this thread running for a sort of moaning post/support group? I'm in a group for Nephrotic Syndrome on FB and it's been invaluable to be able to speak to others who understand.

[RockinHippy]

Saltire did you get a print out of the actual tests they did on your Thyroid ?? - that could still be an issue too

RockinD knows more about this & I'm too foggy to remember the exact tests etc, but thyroid tests are notoriously inaccurate & they often only do a basic one first, if that shows any abnormalities then they might look further, but you need to look at your levels - what accepted as normal in the UK gets treatment in the US & a basic test might show as normal & the other tests T4? Etc can show a problem as can things like ferritin(?) problem

[RockinHippy]

Sounds like a good idea to see your GP juggling

[RockinHippy]

TBH I think that can fit with FM too, though I can be sure as Ive turned out to have a different diagnosis, but I had awful hormonal flares, escalating from 2 weeks prior periods to unable to leave the house for the week & a half wrapping around it & the GP just blamed it on FM, though also blamed everything else on it too.

I should have said, neither DD or I are obviously bendy BTW - I had no idea we were at all because we are no contortionists & its just our normal & as its hereditary, the rest of my family too - yet DD passed as 7/9 affected joints on the Beighton Scale & more joints not used for diagnosis too - I wouldn't pass it now, but would have easily a few years ago, but against the Brighton Scale, I score highly

[JugglingFromHereToThere]

Interesting that this thread has just come up in active convos, as I'm feeling extremely achey today and this has been going on to a greater or lesser extent at least since December. Also feel very tired. I have had some episodes of inflamed joints particularly on one occasion in recent years - blood tests showed inflamation present, and ankles visibly swollen too. At this time due to inflammation in my hips I was unable to walk upstairs - however fortunately it only lasted about a week.
I'm sure how I'm feeling now is related -
Think I should probably see my GP

[Saltire]

*thegonnagle8 - I think I have got secondary reynauds, never actually had it investigated though.

Rockin Hippy - the doc got me to do a hormone diary and there were no more or less flare ups at certain times of the month

[RockinHippy]

Yeah the whole mast cell thing is very interesting & makes a lot of sense for us too - we have no immune disorder diagnosis per se, but both DD & I seem to have endless problems with various infections & viruses & always seem to come worse off than DH with any viruses - this was part of the reason my DM ended up with the MS diagnosis & they missed the EDS right up until the end of her life.


I've a good friend, who ironically is also in the process of being rediagnosed & they now agree she also has EDS, she has no kidney problems & after reading up on mast cells, has taken to self medicating on bad days with antihistamine & she finds it really helps her

Gongle will PM you my kidney specialist, that will help me remember to update with how I get on, apparently the right type of physio can be helpful, which I'm hoping for, I also have surgery coming up soon for a related condition & apparently we don't react normally to a anaesthetic & it needs to be adjusted - Ive twice woken up mid way through light general procedures in the past & don't want to repeat that, so hoping they will deal with that too & any help would be great at I am generally just dropping to bits - brain fog a night mare or me at the moment too, though I'm on drugs to help dearth with an infection & trigeminal neuralgia, which aren't helping my kidneys at all :-/

saltire could hormones be a trigger for you ??? I ask as hormones known to aggravate EDS - Or losing fitness for any reason ?? -

giving birth is a double whammy on that & was a trigger for me & my friend, plus peri menopause kicked in soon after for me which added to it & I went down hill quickly, though I've since - after a battle had other diagnosis too - gall stones fir example was "a bit if reflux due to the FM" we both had some health problems, but nothing that stopped us really - but she suddenly ended up in a wheelchair after her 3 rd DC - we aren't meant to have natural labour apparently

With my DD she was super fit & no obvious symptoms, though with hindsight she did have some more minor problems - that was until she was bedridden for a few weeks & she never fully recovered at 5, but no real diagnosis bar IBS & exhaustion & growing pains (&not to transfer my problems onto her ) - then came her first accident at 8, putting her on crutches for several months, losing a lot more fitness & we've been regulars at A&E ever since :( - other symptoms started to escalate more & more as the hormones started to kick in - which looking back all happened with me too as a kid but once puberty settled down, it all eased again too & I managed a very busy full on life without too much trouble - which I'm hoping will happen with DD too.


So in short - hormones or an illness that means you lose fitness & could bring EDS on properly

[TheGonnagle]

Well, I watched the link and then went off on a tangent looking at Mast cells. This is all very interesting. Are you medicated for your proteinuria, Gobby?
Interesting to see that the drugs I am prescribed are also prescribed for many of the myriad problems that EDS causes, which I suppose makes sense as they are immunosuppressants and so many of the symptoms are immuno related. I'm just looking forward to the brain fog finally lifting and one day perhaps not being so earth shatteringly tired all the time.

[GobbySadcase]

This is all very interesting. I also have HMS (although I suspect EDS as skin affected but Rheum doesn't see point finding out exactly what). My kidneys do leak a lot of protein but I have bor syndrome which is blamed for that. I also have Raynauds.

[mercibucket]

v interesting about the collagen link. do many people talk about it? hope the cellcept works out for you.

[Matildathecat]

Interestingly the Pain Clinic I mentioned is, indeed at UCLH within the neuro dept at Queen Square. Lots of fibro patients being treated with Lidocaine as I mentioned up thread.

[TheGonnagle]

Do you have secondary Reynaud's by any chance Saltire?

[TheGonnagle]

Oh now that really is interesting Rockin. I know the glomular base level that is responsible for my protein leak is made almost entirely of collagen, and EDS is a degenerative collagen issue which is why I made the link in my head. It's interesting to hear your neph is making the link too. Just out of interest, which Neph. are you under?
Mine is certainly contained by immunosuppressants (cellcept) but is by no means cured. Are your protein levels high? Mine are around +1 when medicated but a lot higher without. No blood here though.
I would really appreciate it if you could pm me and let me know how you get on at UCLH. I hope you're feeling well.
I shall toddle off and watch the video now, thanks for the linky.

[Saltire]

Wow some interesting posts there.
The thing is, I wasn't ill or had extreme stress in the 5 years before the pain started. I kept getting fobbed off with flu or growingpains . All my bloodt tests - arthritis, RA, thyroid etc all keep coming back clear.
However other symptoms I get, along with the god awful pain are
Fatigue
Pins and needles
sensitivity to noise and smells
blurred or double vision (only occasionally) and
loss of feeling in fingers and toes

[RockinHippy]

I think mercy that the link is that there a LOT of over lapping symptoms & that misdiagnosis is not impossible, if not as in my case - very likely, also the NHS website blurb for joint Hypermobility syndrome - which for those who don't know it - is a subtype of EDS - lists sensitivity to pain as a symptom.

Gonagle I'm still finding this out myself as I have my appointment with the specialist EDS clinic at UCLH in March, this is on the back of my DD being diagnosed with the hypermobile type, though there's a bit of a question mark over that now too, as I now know there isn't yet a blood test for that type, but my DM was diagnosed with EDS just before she died - this was via a blood test as I asked for it when she was in hospital & at that point getting better, it all went a bit pear shaped after that & I didn't get the details.

It was actually my Kidney specialist that said there is a link & he said he is holding off on further kidney testing until Ive been seen at UCLH - he even wrote to my GP backing the spine clinic that I needed to be seen there. I have blood/protein continuously showing in urine dip tests, no infections, no stones etc & no other obvious reasons for it. I also have CDK3 - partly down to recurring infections some years back, leaving damage, but under control now, but my kidney function has deteriorated further for no obvious reason - he thinks that EDS would be an answer

This Medical Video mentions that it can affect a lot of body functions/ organs, it also explains the FM link I that it affects sleep quality & autonomic nervous function - its a bit long, but very comprehensive

Prof Grahame mention in it & the credits set up & did head up the EDS clinic at UCLH, he recently retired, but staff there were all trained by him

[mercibucket]

TheGonnagle, just an aside, are you taking high dose vit d? you lose vit d receptors alongside protein so it is a v common deficiency. i have never heard of a link to eds, but lots of links to autoimmune conditions and also a possible link to celiacs

[Matildathecat]

Sorry to barge in, I don't have fibro. I do, though have severe back pain and sciatica.

I'm under a Pain Clinic attached to a very major London hospital and recently had a Lidocaine infusion as a longer term pain treatment. It didn't help me but I was chatting to the nurses who said that the group of patients who did seem to benefit were the fibro ones. They were able to return for repeat treatments several times a year.

Anyone tried this?

[TheGonnagle]

ANd yes, Chinese is much more helpful for me too.

[TheGonnagle]

Hi there and sorry to jump on your thread, but could I ask you what your kidney symptoms of EDS are Rockinhippy?
I have EDS III and I also have Minimal CHange DIsease, causing nephrotic level protein loss. My Nephrologist is dismissive of a connection between the two, although I'm sure they're linked.
Sorry for the hijack Saltire, fwiw I have absolutely found acupuncture really useful for the moodswings and fatigue I suffer with my immune problems.

[RockinHippy]

BTW its a medically known fact, that pain killers don't work well for EDS/ JHMS

[RockinHippy]

Thinking on it - if you have other symptoms that could suggest an UNDERactive Thyroid, you might want to try taking a sea kelp supplement - if this helps, then RockinDs likely to be right, as the iodine in this works on the thyroid

[RockinHippy]

Oh & you might want to show your rubbish out of date with his info Doctor a print out of the NHS blurb on FM - that's his EMPLOYERS stance on it & it no longer says its a disease if the mind

Though that said, the mind IS a very powerful tool fir dealing with it & CBT can help

[RockinHippy]

I'm with RockinD in that Fibromyalgia isn't the primary condition that's doctors would often have us believe, though thyroid issues is just one of many conditions that produce it as a symptoms & I suspect when it is apparently primary, the underlying condition causing it is something medics haven't yet got a handle on.

I was diagnosed nearly 11 years ago, keeping on complaining as I too didn't like the doctors inference that its a mental disorder when it is not - that got me an added M.E. diagnosis

Its only now I am finally getting a correct diagnosis - which is Ehlers Danlos Syndrome Hypermobility type & Fibromyalgia is a listed symptom of that - though listed as pain sensitivity on the NHS blurb, the specialist who diagnosed my DD said that its closely linked to FM & FM is often a symptom of EDS/JHMS.

because of this what works for you is really going to be dependent on the true root cause of YOUR FM. I did have some success with Accupuncture, but it was extremely painful for me - the meridians running between the pin sites felt like electic shocks for the whole time I lay there - the therapist who was trained in China & very knowledgeable said this meant my system was toxic - ironically it turns out my kidneys are also affected by EDS, so this turned out to be a medical fact.

The other thing to bare in mind, there are 2 types of Accupuncture - Western & Chinese & they do differ & IMHO & experience the traditional Chinese type is more affective.

Personally Ive found Chiropractic & Manual Lymphatic Drainage massage to be more effective than Accupuncture, along side high doses of magnesium, Macca Powder, Spirulina & aromatherapy

[RockinD]

The chances are that if you have a diagnosis of fibromyalgia that you have issues somewhere on your Thyroid/adrenal axis. This is why it often starts after a period of illness or stress.

The word 'fibromyalgia' simply means that your muscles hurt. The way to improve things is to find out why, but this is what doctors seem reluctant to do, possibly because it is simpler just to state the obvious and then send you away with a pat on the head and a scrip for amitryptiline.