shock wave therapy or oxygen therapy, - Fibromyalgia Acti...

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shock wave therapy or oxygen therapy,

JazzElvis1 profile image
59 Replies

anyone tried , shock wave therapy or oxygen therapy, I’m about to try. Will let you know the results in a few months …

59 Replies
Alanna012 profile image
Alanna012

Interesting! What is oxygen therapy? Is is administered in a hyperbaric oxygen chamber?

JazzElvis1 profile image
JazzElvis1 in reply to Alanna012

yes that’s it

Alanna012 profile image
Alanna012 in reply to JazzElvis1

Omg! You have to let us know how it goes! I'd love to do it, if only I could afford it. Please do update. One side effect is that you'll look a bit younger....or so I've heard!

Alanna012 profile image
Alanna012 in reply to Alanna012

Although I'm sure you look young already (digs hole deeper)

JazzElvis1 profile image
JazzElvis1 in reply to Alanna012

ha that’s funny , but I hope

Blearyeyed profile image
Blearyeyed

Unfortunately, since 2019 , the NHS has refused to fund any HBOC treatment unless it is for decompression sickness or certain types of embolism. Some charities still fund it but they prefer to take referrals from patients suffering from the illness the charity was set up for now because they cannot get reimbursed for treatments. As far as I know there are no private charity funded centres for free treatment for Fibro , but I'd love to hear info on that if anyone has it.If you are going to fund sessions yourself it's important to prepare your body and brain for it , and only begin with very short testing sessions in case you have side effects.

Get outdoors doing breathing exercises in open spaces with little air pollution like a wood or near the coast. Increasing your oxygen intake in normal circumstances is important to help you acclimatize to using the therapy.

Some people try short breathing sessions ( about 5-10 minutes) with cylinder oxygen therapy at home and this can be quite positive once you get beyond side effects like headache , nose pain , dry throat and sometimes nausea. Again , it is better to learn the technique with a qualified medical oxygen therapist or get advice from your local respiratory illnesses unit rather than just trying it and you need to have someone with you in case of side effects when you do it. As you can't get oxygen support for Fibro unless you also suffer from respiratory or lung issues that require it you need to purchase the cylinders and masks yourself and it can be very expensive to do the treatment in the right way, consistently and with approved oxygen products.

If you suffer from Chronic Migraine Syndrome as well as Fibro you can get rebound migraines even after short sessions. I have tried this therapy but found that I needed some level of oxygen each day over a number of weeks before the rebound headaches passed , although it did make my body feel a little less stiff and I had more energy in general after I had treated the headache.

Unfortunately, needing to maintain the treatment regularly to stop the Migraine effect and get the benefits was too cost prohibitive for me.

Interestingly, it is another one of those therapies that gives you better improvement when you are not in a flare and in generally good health . It is better as a preventative therapy increasing energy and oxygen to the muscles making it easier to do activity and self care which then helps prevent the Fibro Fatigue and Pain.

I assume , you are considering some form of TENS or Neurostimulation device rather than Electro Shock Therapy?

Alanna012 profile image
Alanna012 in reply to Blearyeyed

That's really interesting Blearyeyed, great information. Did you not find any lasting improvement for the fatigue and/or muscle pain? Where there any unexpected benefits at all (even for non-migraine related or fibro)

Blearyeyed profile image
Blearyeyed in reply to Alanna012

The benefits were mainly for Fatigue and movement and some muscle pain and eventually for headpain , thinking and concentration skills did also improve slightly , but it isn't a " cure" the treatment needs to be maintained regularly, and depending on your other illnesses or symptoms sessions required need to done more frequently. I found no difference in benefits between HBOC and oxygen therapy with cylinder gas . Combining either one with more exercise or breathing activities in the fresh air gave more significant results. Basically , it's increasing oxygen levels and better blood flow that makes the most difference to pain and fatigue , especially if you also have some level of circulation problem . Improving the air quality and ventilation in your home can actually help a great deal along with time spent in outdoor activity.

Much like with most complementary therapies the benefits only continue if the treatments continue. I'm currently researching the possibility to be referred for Spinal Neuromodulation it may be possible to receive it on the NHS with my combination of conditions , and with jumping through the endless hoops!

biker888 profile image
biker888 in reply to Blearyeyed

yep oxygen therapy certainly can help fibro , especially for sleep patterns , yes its used in sport for extra energy / strength , ie , Eddie THE BEAST Hall , strong man , he sleeps in an oxygen tent ! , he swears by it , albeit he swears and farts all the time , could be the reason his wife is happy for him to sleep in his oxygen tent :)

desquinn profile image
desquinnPartner in reply to Blearyeyed

There was a popularity with HBOC after some Israel based studies. But for fibro the evidence is still weak. I think it is the MS charities that are trying to improve access to it if anyone is looking for them. But be aware there are also other oxygen therapies used in sports medicine that are the other end of HBOC.

JazzElvis1 profile image
JazzElvis1 in reply to Blearyeyed

thank you for the informative advise , will take into consideration, I’m doing 30 deep breaths at night and in the day , which is so good to relieve stress out of the body! I e had 3 shockwave treatments so far , I have a tens machine but didn’t find that too helpful!

Cat00 profile image
Cat00 in reply to JazzElvis1

Blimey what's shockwave?

JazzElvis1 profile image
JazzElvis1 in reply to Cat00

Extracorporeal shockwave therapy is a non-invasive, out-patient alternative to surgery for those with many joint and tendon disorders. ESWT sends acoustic shock waves into bone or soft tissue, in effect reinjuring the area on a cellular level and breaking up the scarring that has penetrated tendons and ligaments.

Blearyeyed profile image
Blearyeyed in reply to JazzElvis1

I assume you also had to fund this yourself in the UK. It's another one if those treatments that NICE are willing to fund for short term injuries or spinal issues if other treatments aren't sufficient but they do not fund for long term chronic pain alone.They based their decisions on more diverse technological and electrically based therapies on studying previous small scale studies, which, on the whole, they considered were lower than average quality in terms of the research methods.

They concluded that there did not seem to be enough significant change in any of the test parameters to make things like ESWT , Ultrasound , Laser therapy , Cranial Electromagnetic stimulation and others available for Chronic Pain on the NHS . The 2020/21 conclusions were based on the available medical research and economic cost on this occasion was not included in their decision. Evaluation was based on change of pain scores , quality of life , psychological distress , ease of treatment , ease of access, among others.

The one thing they did allow was the continued access to short term provision of TENS units and TENS instruction via the pain clinic or Physiotherapy.

Of course , this highlights the flaw in the system. They can't assess good test information on whether regular long term use of these therapies would benefit people with a variety of chronic pain conditions because there isn't enough good evidence. But you can't get quality research data unless the treatments are available and being used in a consistent way via the NHS or a well funded large scale study.

JazzElvis1 profile image
JazzElvis1 in reply to Blearyeyed

yes I’m finding myself, £30 for oxygen a time and £40 for other

Blearyeyed profile image
Blearyeyed in reply to JazzElvis1

One way to improve Fatigue and the Fibro pain associated with it is to do one of your sessions of breathing just after breakfast next to an open window that lets in good morning light. You do the breathing exercise then just breath delibarately while enjoying the sun and your morning cuppa.It's a technique that I learnt a number of years ago whilst testing out ways to improve sleep patterns and Fatigue.

The combination of both good light and fresh air , even in the Winter , helps to boost oxygen and Vitamin D and improves release of serotonin.

By sitting by the window you get the benefit before you try to do the activity or exercise of the day. It's worth doing even if you are not mobile or in the middle of a flare.

Cat00 profile image
Cat00 in reply to Blearyeyed

How is this different to mindfullness? It just sounds like being outside with meditative breathing. I had a device that my neurologist trailed which was a External Trigeminal Nerve Stimulation Device but it didn't have any positive effect on me unfortunately. I wonder how sounds waves would differ from electrical waves...

I think the trouble with all these treatments is they may help a bit but not enough to pay for all of it. Unless of course it made you well enough to work, you could offset the cost then.

JazzElvis1 profile image
JazzElvis1 in reply to Cat00

an oxygen tank is alit more oxygen than breathing

Cat00 profile image
Cat00 in reply to JazzElvis1

I was talking about breathing out a window thing not the oxygen tank thing.

Blearyeyed profile image
Blearyeyed in reply to Cat00

I'm not sure which but you are asking about.If you are asking about the breathing by a window it is a type of Mindfulness Breathing Technique made easier for those with Fatigue or mobility issues whom can't get outside for a walk or to do meditation, combined with some scientific research about light . By sitting in morning light you can reduce Seasonal disorder , and get some Vitamin D .

I do sound therapy for my headaches with no electrostimulation. I've found that helpful with symptoms of Tinnitus and Migraines caused by circulation , it has also helped reduce tension in my joints . But again , I learnt about the possibility through research and worked out my own system at home so I can keep it up without spending a penny. I use well composed Hertz recordings rather than sound bowls etc.

I am also researching and creating my own light therapy at Home.

You are absolutely right , all complementary or add on therapies can have an effect , for some people small , others it can be more significant, but like all of our Self Care they need using regularly to maintain their effect . That goes for everything from vitamin supplementation and physio right through to acupressure or electronic stimulation. Unfortunately, you also usually need the right combination of various therapies alongside pacing and good self care to get the maximum relief and that becomes cost prohibitive, even if you can manage to stay in work or have savings.

Even the significantly useful therapies like Hydrotherapy, aqua physio , acupressure , medical massage , which are available on the NHS are not available everywhere or long term . The system also seems to be misguided in the idea that when the treatment works you must be cured and you usually only get offered courses of 8-10 sessions . You then need to hope that your therapist will sign you on for more free courses , or you end up needing to pay for subsidised courses instead.

They seem to forget that this is a chronic condition without a cure and assess therapy needs like they are treating an injury instead.

Cat00 profile image
Cat00 in reply to Blearyeyed

Yes I have this problem even for my major drug treatments. I have chronic migraines, for 30 odd years, over the last 10 years I have had quite powerful drug treatments to attempt to lesson their frequency and severity. This amounts to a preventative in pill form an abortive in pill form then either Botox or CGRP antibody. But every time these drugs start to actually work I dip below the threshold of chronic, so less than 15 days a month, and they stop the major drug treatments and I become chronic again within 2 months. I really wish they'd stop taking me off something if it works!It is amazing you have developed your own sound therapy at home. Is the light therapy like the one you get for SAD, I'm very effected by light and sound?

Blearyeyed profile image
Blearyeyed in reply to Cat00

Not quite, both the sound and light therapies I'm trying to adapt are based on the research being used to help people with MS and Parkinson's . The sound therapy is Hertz based recordings which last about 8 minutes , during that period I sometimes watch slow moving kinetic light. The light therapy is somewhat different and my first sessions were under supervision so I wouldn't suggest others trying it unless they did the same. I have a friend whose currently working on a light emitting box for me as the unit itself would cost a fortune.

I have Ehlers Danlos too so I didn't even attempt Botox when it was offered , especially as the anesthesia injections I had in the back of the skull which were meant to numb the issue for a number of months didn't last past the half hour I had to sit in the waiting room to make sure I didn't faint. By the time I got back to the car my head was pounding , the tinnitus was worse than it's ever been and it triggered my Trigeminal Neuralgia which it was also meant to help. Plus I had a hypersensitivity reaction at the injection sites.

It was only on doing more research because I was fed up of being given treatments that made everything worse that I discovered local anaesthetic may not work on EDS sufferers , a reason for my years of torture at the dentist when nobody would believe I could still feel what was happening .

Cat00 profile image
Cat00 in reply to Blearyeyed

Many have suspected I have EDS too but I don't think I do. I have IBS bladder problems, chronic migraines, fibro, osteopenia. I've broken 6 bones but I've never dislocated. Anaesthetic either doesn't work or takes a long time to kick in. I have two friends with EDS one's in a wheelchair the other has a mobility scooter, they both have heart problems and sublax every five minutes whereas I do a lot of sport.

My husband is an electronics consultant, during his degree, many years ago now, he specialised in acoustics so when we moved to our house he built a sound proof room for me to ill in plus to help with my insomnia etc. He experimented with different types of noises too but they all drove me crazy.

Blearyeyed profile image
Blearyeyed in reply to Cat00

There is a possibility that your have Joint Hypermobility Disorder which can have similar symptoms to EDS but without being classed as a Connective Tissue Disorders or the subluxations. It might be worth doing a Beighton Test , even at home first , to test your range of movement. I dismissed it for years and was originally diagnosed with severe GJHS. I thought the same because the people I knew with EDS were on crutches or in chairs very early on . I'd always been sporty , although I should have realised really as my athletics career was cut short because of recurrent shoulder dislocations. I just didn't realise that popping your knees out and then being able to work them back in was unusual , I thought everyone could do it because my Mum , Aunt and cousins could do the same!

I think how well sound or light therapy works depends on what origin your Migraine comes from. I do suffer from photo and phonophobia in normal situations .

Cat00 profile image
Cat00 in reply to Blearyeyed

I've had migraines since I was 4 years old so who knows what really caused them, genetics and stress from childhood most likely.

I've been measured on the Beighton score many times but can't remember what my score is, they did it again just before Christmas because of my bones. I have very hyper mobile ankles and wrists and shoulders but not my elbows, knees and pelvis. I think a lot of my pain comes from my hyper mobile joints.

I've always been sensitive to my environment, especially sound but also heat, cold, light etc its exhausting!

Lupusrelative profile image
Lupusrelative in reply to Blearyeyed

sort of off topic; when taking deep breathes, do you find that you get light-headed?

Blearyeyed profile image
Blearyeyed in reply to Lupusrelative

You can do , especially when you first start to try breathing techniques. You can also get very hot . They are both symptoms caused by Autonomic reactions and the increase in oxygen to the brain.That's why it's better to begin these exercises while sitting with eyes closed in comfort . Begin by relaxing and breathing less deeply for a minute first but breathing regularly . Try breathing through the nose then slowly from the mouth.

Lupusrelative profile image
Lupusrelative in reply to Blearyeyed

thank you! Although we do live in the Mile High City. Breathing here is difficult anyway.

Blearyeyed profile image
Blearyeyed in reply to Lupusrelative

I am fortunate to live on an island with clean air , but I've spent lots of time living in cities so I know how difficult it can be to get to a relaxing , green spot. Are you anywhere near Sloane Lake ?

Lupusrelative profile image
Lupusrelative in reply to Blearyeyed

we are in Broomfield, north of Denver. Classed as a ‘Tree City, USA’. The altitude here is approximately 5,400 ft above sea level, hence less oxygen.

I’m originally from Liverpool, UK, and also lived in Venezuela for over 15 years. I miss the coast so much.

Blearyeyed profile image
Blearyeyed in reply to Lupusrelative

I was born on the Wirral myself. It's part of the reason I moved closer to the Coast after living in the middle of the country, I missed the sea so much. You have the added issue of breathing outdoors being equally more difficult because of the altitude, exercises may well be harder or you may be more lightheaded doing them because of the lower oxygen levels.

Have you ever discussed , or considered , that living above 3000 feet could be triggering your symptoms of pain and cognitive dysfunction more , causing a sort of chronic altitude, or mountain sickness?

I suppose the only way you could gain evidence of that would be to spend some weeks living and doing the same activities at Sea Level and then doing the same at altitude and seeing if there is a significant change in your health and symptoms.

Lupusrelative profile image
Lupusrelative in reply to Blearyeyed

I do always feel better at sea level and also love the humidity. We spend quite a few weeks of the year in Nayarit, Mexico.

Both my sisters have autoimmune immune diseases, lupus and RA. My doctor has always suspected I may have RA but tests come back negative. I was diagnosed with fibromyalgia about three years ago. I truly think it had to do with one of my sister’s death. It really was horrendous the way she was treated in the hospital. We have since had a very profuse apology from the Trust. During her last 18 months in hospital I was back and forth to Liverpool most of the time. That was when all my symptoms started. Whether the fibro was lying latent and suddenly flared, I’m not sure about. Ho hum, who knows. We just have to do everything possible to try and stay healthy.

Where is it you live now?

Blearyeyed profile image
Blearyeyed in reply to Lupusrelative

Sorry to hear about your sister .Genetics triggered by Stress ( and Stress isn't just bad experiences but doing too much if a good thing too ) that's the origin of most of us developing what lurks in our medical makeup.

Unfortunately, when they kick off we often find the things or places we loved the most are also the things that trigger flares or make our symptoms worse , like the hairy cherry on top of the cruelty cupcake.

Many people find they don't just give up activities or swap jobs but even move home to be in a place which gives them less pain and more quality of life.

I very nearly lived up a mountain by the sea when I first moved when things were not as bad. I live on a island of the North Wales coast now. Great for the environment, but awful in terms of access to health care , both NHS or private therapies.

Lupusrelative profile image
Lupusrelative in reply to Blearyeyed

sounds wonderful though!

JayCeon profile image
JayCeon in reply to Lupusrelative

I definitely do, if I may chip in, but in a positive way, also "light-bodied" which is good for pain and fatigue, can reset. Normal deep breathing, but especially Wim Hof's.

Lupusrelative profile image
Lupusrelative in reply to JayCeon

I will definitely take a look at those breathing techniques. Thank you.

fmlife profile image
fmlife

no not heard of these before for fibro,

is it something like the abyss movie working down a fair depth in sea?, does sound interesting, seeing what's down there.

they were touring titanic on the bbc news channel other night in a tube, the forward controls got mixed up.

Alanna012 profile image
Alanna012 in reply to fmlife

Similar pressure to that experienced by deep sea explorers, however my understanding is that it's a chamber above ground that you can actually walk into in some cases and the oxygen is pumped into it.

fmlife profile image
fmlife in reply to Alanna012

that's a shame no sea life to look at.

look forward to future posts on whether helped.

Alanna012 profile image
Alanna012 in reply to fmlife

It is a shame! If they threw actually seeing sea life into it I think I'd go too.

Nelly1 profile image
Nelly1

I tried Oxygen therapy. The one where you are in like a divers tank. Didn’t do anything for me but we are all different and react to treatments in different ways.

Good luck and I hope one or both works for you.

Cat00 profile image
Cat00

There's one near me, I looked into it, partly bc I scuba dive and I'd met people with MS who benefited from it. It was about £50 for half an hour. I have chronic migraines so in glad I didn't do it, I'm having them every day at the moment.

Alanna012 profile image
Alanna012 in reply to Cat00

That's a fairly reasonable price judging by what I've seen online. Still prohibitive though if you need a fair few sessions. Interesting that MS patients presumably do well on it, so much so that the MS charity is pushing for continued access, but response in Fibromyalgia patients seems (on the surface) somewhat more variable.

Cat00 profile image
Cat00 in reply to Alanna012

Yep didn't think the price was that bad, still when you don't earn any money, I don't, it's too much to do on the vague hope it could work....

Alanna012 profile image
Alanna012 in reply to Cat00

Oh I completely agree on that score, I regularly shop at Broke-R-Us.

Cat00 profile image
Cat00 in reply to Alanna012

Ha ha ha so do I!

Alanna012 profile image
Alanna012 in reply to Cat00

😄😄 Next time you're there, say hi!

twizzle303 profile image
twizzle303

Hiya, i was very lucky to live near Portsmouth where the MS society has a chamber and I used it for a while. Its an interesting experience and I know those with MS do find it very helpful. It was very affordable for those who want to try it. At the time I didn't know I had fibro and went for all the pain I had especially in my legs but I dont think I felt any benefit or I would have kept going. I think I had over 10 treatments so plenty of time for it to work if it was going to. It does take a few treatments if it will work and everyone is different so give it a try and I have everything crossed for you.

Alanna012 profile image
Alanna012 in reply to twizzle303

Ahh the MS society has a chamber, that's interesting. How much was it? So I'm wondering what the difference is that means MS patients find it helpful, but Fibromyalgia patients less so (assuming from responses here, has a study been done on its use for fibro patients with follow-up?)

The two conditions aren't the same but it would be interesting to work how the therapy is helpful, by what means, or mechanism exactly.

twizzle303 profile image
twizzle303 in reply to Alanna012

It didn't cost much, definitely affordable weekly. No idea where you are but they are dotted around the country.

The portsmouth one is MS society. g.co/kgs/hbXp63

But no idea about others sorry.

JazzElvis1 profile image
JazzElvis1 in reply to twizzle303

thanks have sent an email

Blearyeyed profile image
Blearyeyed in reply to Alanna012

The benefits they find are improved cognitive skills , varying degrees of improvement in thinking , balance and coordination and some change in tremors on the whole.

Alanna012 profile image
Alanna012 in reply to Blearyeyed

That's brilliant thank you Blearyeyed. My sister-in-law has MS and I will let her know about this.

Blearyeyed profile image
Blearyeyed in reply to Alanna012

Oh excellent ,I hope she considers it and can get access to trying it out. Do you live near each other , they may allow you are discounted session in a chamber if you are there as her carer or emotional support . Some people can get nervous first time using new things.

Do you live near each other?

It can be helpful to have a gentle exercise and movement training buddy for both Fibro and MS, if you try things together you could both improve with each other. Which would be a big mental health boost too.

Take care and send my regards to your sister in law , Bee

Alanna012 profile image
Alanna012 in reply to Blearyeyed

Thank you for your sweet reply, we're sort of near...it requires a bus to get to her. She's in a wheelchair now unfortunately. Believe me she has more spirit and get up and go than I do, I'm ashamed to say. Going together is an interesting idea, yes, thank you so much Blearyeyed x

JazzElvis1 profile image
JazzElvis1 in reply to twizzle303

shame they do T to it there as I live not far , I will have to travel

JazzElvis1 profile image
JazzElvis1

well , many different reply, not feeling as hopeful , but maybe a good thing, spent thousands on health so far

JayCeon profile image
JayCeon

On  Blearyeyed 's note, I regularly use Wim Hof's Breathing Technique and similar forms, like deep breathing or holding it in or alternate nostril breathing, which all help in various situations.

And I tried an oxygen therapy no one's mentioned for a few months, oxygen / ozone injections, meaning autologous blood therapy, blood taken off, enriched with a mix of oxygen and ozone and that put back. It had no adverse effects, except the price, which was OK and my insurance did take it after we pretended there was something else added. But it helped less than Wim Hof's breath-holding, which is sometimes brilliant and never bad, recharges the battery quite a bit, as well as replenishing the oxygen that often seems to be missing.

youtu.be/tybOi4hjZFQ

JazzElvis1 profile image
JazzElvis1

update ! Well I changed my mind on the oxygen therapy for now , and instead I am doing light therapy , it is called novo Thor, it’s a bed like a sun bed but red light, which renews cells and release the blood flow for oxygen ! I’ve had 2 sessions, but they said for fibro I may need 18 , so at th he end I will report !

Shock wave therapy - I’ve had 4 sessions and the last one this Wednesday, it breaks down fibrous scar tissue, then yiu break for the muscle to heal smooth again, im having on acchellis tendinitis, calf , one hamstring, low back for now , if on the 5 weeks rest I see significant improvement , I will do more on other parts, unfortunately I cant do near the ribs because of lungs. It was my upper back which started many years ago with spasms, , I suppose it makes sense to me after having muscle spasms prolonging years , it probably developes scar tissue , so breaking they down to heal again, seems logical , will let you know how all goes !

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