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Anyone with Fibromyalgia?

(33 Posts)
Saltire Sun 19-Jan-14 01:45:43

Have you tried acupuncture? Did it work/help

GobbySadcase Sun 19-Jan-14 01:50:29

Absolutely it has for me.
I know others it hasn't worked for, though.

What I'd urge caution on is don't expect it to be a miraculous cure. I find it improves my pain levels, helps with insomnia which helps my energy levels - a bit.

That bit is a gift for me and I'm grabbing it with both hands. But don't expect it to make you feel 'normal' for want of a better word.

Saltire Sun 19-Jan-14 01:56:36

TBH I am not expecting it to be a miracle cure, someone mentioend that they'd tried it and it worked.
I don't get flare ups all the time so not sure if it would work if I didn't have a flare when I had it done.
Tonight I am 5 days/nights into a bad flare, I am downstiars becasue the pain is so bad I can't sleep, and the painkillers aren't touching it

GobbySadcase Sun 19-Jan-14 02:00:03

I do sympathise. As you can see I've started a new insomnia cycle quite soon after my 3 night with zero sleep last week.

I do have to have 'top up' sessions even when well and still feel better for it.

I found a gauge was in November where I couldn't attend for 6 weeks as I couldn't afford it. I felt significantly worse.

Saltire Sun 19-Jan-14 02:03:14

and as you can see the spelling is going too, thats usually a sign of a flare up.

This is such a horrible ilness, I always feel such a fraud with it, but the pain is jsut starting to get me down, the flares have got more intense over the past few months.

I am going to take some more painkilelrs and try to sleep

GobbySadcase Sun 19-Jan-14 02:05:30

I'm lucky in that I have autocorrect. My actual speech sounds like I'm drunk.

Hope you can sleep x

Saltire Sun 19-Jan-14 02:11:34

Thanks, and you too

walkdowntheavenue Sun 19-Jan-14 02:13:37

I was diagnosed with this 3 years ago. I haven't found anything that works for me yet but a "helpful" pain specialist told me last week that it's a disease of the mind, there's nothing wrong with me physically?
I'm still baffled and a little upset by the remark

RockinD Sun 19-Jan-14 10:44:50

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.

RockinHippy Sun 19-Jan-14 11:04:02

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. diagnosishmm

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

RockinHippy Sun 19-Jan-14 11:06:48

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 mindhmm

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

RockinHippy Sun 19-Jan-14 11:10:02

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 Sun 19-Jan-14 11:11:55

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

TheGonnagle Sun 19-Jan-14 11:18:36

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.

TheGonnagle Sun 19-Jan-14 11:19:47

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

Matildathecat Sun 19-Jan-14 11:54:26

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?

mercibucket Mon 20-Jan-14 09:30:56

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

RockinHippy Mon 20-Jan-14 15:18:58

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

Saltire Mon 20-Jan-14 21:08:50

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 hmm. 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

TheGonnagle Mon 20-Jan-14 21:12:14

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.

TheGonnagle Mon 20-Jan-14 21:15:10

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

Matildathecat Mon 20-Jan-14 21:59:30

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.

mercibucket Mon 20-Jan-14 22:10:34

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

GobbySadcase Mon 20-Jan-14 22:10:48

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.

TheGonnagle Tue 21-Jan-14 10:59:26

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.

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