As a physio student (a long time ago) i used to give ultrasound, I also received it after having damage to the tendons at my wrist. Unfortunately it didn't speed up my healing, but that was before I discovered I had Ehlers-Danlos Syndrome, which didn't help. The following article mentions that it was found that ultrasound benefited some patients very little with some conditions: verywellhealth.com/therapeu... I wouldn't really think it would be indicated for fibro pain.
Re: TENS machines, I've used 3; one was kindly lent to me, then I bought one, which I passed on to someone else, & the third was lent to me by the physio department. Yes, it helps by distraction if you can find the best pulse that works for you. The downside, you can only treat one area for a short time, so if one area is particularly bad it certainly has its uses, but difficult to treat widespread pain effectively.
I'm sorry I can't say ultrasound decreased the pain with the injury I'd had, but that was soft tissue damage. Everyone's different, even us EDSers, but personally I can't see it helping.
Hydrotherapy is certainly great, but if you can borrow a TENS machine, it's worth trying. I'll send you a PM later, if that's OK?
Just read the article , it does mention that it increases elasticity , and as we have ligaments and tendons that are as overstretched as snapped knicker elastic , I'm wondering whether there is the possibility that it cause the joints to get more lax than they already are.
I’m across the pond 🇺🇸 so I can only help with my experience.
I too have hEDS and a plethora of other comorbidities. 🙏
I have a history of around 36 ground level falls and 1 35 ft fall from a treetop….landed on my back.
I also was drenched in a chemical at work (my clumsiness) that caused severe neuropathy.
Then pain I was having just wasn’t manageable and I won’t take pain meds ( family history of drug/alcohol addiction) so my insurance here paid for my TENS unit. I did try it for a couple of months….this was in 1999; while I realize this was now decades ago the basic principle still applies.
My unit had two knobs for selection of settings you can choose from. It had wires that ran to electrode pads at the wire ends. I had to attach foam adhesive pads infused with I conductive gel onto the electrodes then place one wire & padded electrode above the area targeted and the other wire & electrode below the target area.
The TENS is powered on by batteries 🔋 then the intensity knob is turned from 1 - 10 until you feel the electrical pulses and not the pain.
Personally I didn’t like being constantly electrically ⚡️shocked. It hurt worse than the pain in my case. So I put it in storage for future use by hubby maybe.
However we are all uniquely different and it might help you. Over here patients could rent their Units back then……not sure if that’s an option for you there. 🤔
Note : next comment is for education not to scare but prepare you to prevent irreversible damage/suffering ;
I have a leaky heart mitral valve….murmur diagnosed in infancy (autoimmune related/hEDS). My heart doctor put me on a full dose 325 mg buffered aspirin to prevent blood 🩸 clots from forming due to the valve flutters from the closure failures. This was a lifetime meds treatment. I have faithfully taken this aspirin for 50 years and 2 weeks ago tomorrow I went to hospital Emergency Department in serious trouble with GI crisis. I couldn’t pass gas/food or keep any water 💦 down/projectile vomiting 🤮.
12 days of gastric distress 5 days without food 2 days without even water 💦 and 10 days of GI distention that felt like a balloon 🎈 ready to pop.
Hospital admitted me for suspected bowel blockage did endoscopy and discovered my aspirin therapy has nearly destroyed my stomach lining. Have severe erosion issues at bottom esophagus…an hourglass pocket of good tissue between esophagus and top of stomach at the pyloric sphincter muscle. This allowed water to stay in hourglass pocket while laying on left side but rolling over on right side caused projectile emptying of same water 💦.
I have Peptic Ulcer Disease 🦠 with a serious infection…….the treatment is almost worse than the disease. Wouldn’t wish this on my worst frenemy ( friend turned enemy).
My life is now unimaginably restricted 🚫 to everything I use on or put in my body. I can’t use anything that effects the prostaglandins in my GI tract/ that will be absorbed/ processed via the stomach/bowel. AVOID long term use of aspirin/NSAIDS to prevent my experience being yours/anyone else’s. I took precautions and always took food to coat my stomach with every aspirin taken…long term aspirin/NSAID use is NOT buffered by food…..it erodes the GI tract protective tissues that keep stomach acids from destroying your GI tract. ALL of this is from my host of GI Specialists at the World 🌎 renowned University of Michigan Hospital.
🌸🌿🌸🌿🌸🌿🌸🌿🌸🌿🌸
GOOD NEWS now….I can still use Lidocaine for my fibro and autoimmune immune diseases that cause my pain/painsomnia.
It doesn’t get absorbed by the skin and processed via the stomach. Thank God I have at least one relief option left which I will use as last resort because I don’t want to build resistance to it.
🦋🌿🦋🌿🦋🌿🦋🌿🦋🌿
Apologies for this long reply but I felt compelled to teach others to be cautious about something a simple as a little ole aspirin thought to be harmless if buffered for long term use.
I hope and pray that you will find some relief for your suffering sweetie and will not encounter ANYTHING that makes living life more complicated than it is.
♥️🕊♥️🕊♥️🕊♥️🕊♥️
To the HU team/desquinn:
Please let this reply stay as a teaching tool for everyone who reads this. I don’t want anyone else to go through what my life has been like since May 28th and will be until I pass. Everyone can learn from my mistake.
I thank you so much.
🕊♥️🕊♥️🕊♥️🕊♥️🕊♥️
Bee I just said a special prayer for you sweetie. I wish the best for you and relief for your pain.
Aw honeybug!!😕 What a horrible time you've been having, definitely wouldn't wish that on my worst enemy. It's so annoying when you think you're doing the right thing ........ 😩 Hope you're starting to feel a bit better and I have certainly taken on board your words of warning, thank you!
Thank you so much for reaching out with your experience , especially when I know how hard it must be to do even simpler tasks with your health condition.I will definitely take all of your advice on board as I'm so similar to you.
I do quite well at managing my falls and dislocations from the EDS , but I do , like at the moment get a few more serious injuries each year , at the moment I'm on bed rest after a hip dislocation as it caused more damage than usual and I can't walk.
And as you know , the EDS pain and falls bang heads with the Fibro and cause it to flare too.
I have Dysautonomia from a physical fault in my heart , not just an autonomic nerve one , and my Cardiologist actually rang today to check how I was after the fall ( surprisingly and kind , he gets alerts if something happens to me clearly that I didn't know about) , but he also booked me for another scan to check my leaky valve risk.
My platelet blood results have gone up high too , so they do want me to start taking Aspirin at a higher dose every other day because of the greater clotting risks . I take a very low dose every other day currently , but they are considering blood thinners instead after more tests , they think I might be adding yet another condition on my ever growing list , thrombocytosis.
I have gastro problems as well , so my doctors have always been careful with prescribing aspirin or other NSAIDs , only usually for emergency events or very specific inflammation pain. I only ever take them with a serving of natural yoghurt just after food to protect my stomach lining and my stomach symptoms are checked often. Of course , now we the increase they recommend for aspirin I am going to take extra care and I will discuss with them if the benefits will outweigh the risks , or if I can get an alternative to protect me from clots that protects my stomach as well.
I will probably mention your experience as a thing that I would want to protect myself from( although not your name or screen name obviously)
Your reply is so valuable , thank you.
Take care and please feel free to keep in touch on private messages with me if you want. It's hard to find Faraway Friends that are so similar to us , and it is nice to have someone to just chat to , to lift the gloom , who knows what it is like to wobble and fall in our shoes.
Take care and I hope that they will be able to help you more with your heart and gastric symptoms , as well as the pain ones very soon , gentle hugs , Bee x
Hi @honeybug - whilst it's great to meet another with hEDS + comorbidities, I'm so dreadfully sorry for what you've gone through, especially recently. I read many years ago that NSAIDs just don't seem to work for those with pain due to Ehlers-Danlos Syndrome (as you've said, just in case someone later reads this).
It's important to raise the issues you have done, so thank you. Patients should always have an honest discussion about side effects of meds with their Drs weighing up the pros & the cons.
Just to let you know I wish you all the best, & appreciate hearing from you across the pond. I personally have learnt more from USA specialists than our UK ones.
My experience wasn't as severe as yours, but along the same lines. A doctor prescribed ibuprofen three times a day to keep down inflammation from an injury while I underwent PT. I did as I was told until I developed stomach pain so bad I was seeing doctors for three years without relief. The stuff scares me now.
Everyone should be afraid of anything used/ ingested that interferes with prostaglandins.
Propylene glycol is a chemical that does this as well as alcohol/aspirin and like products/NSAIDs. Just about every product I use on my body has this chemical in it which is absorbed and processed via stomach.
After hospital discharge I came home to find only couple of products that I could use. My hubby had to shop for infant body wash/shampoo because I no longer can use the plethora of products I depend on to not cause allergic reactions and work on my many health problems.
This will be a problem till I pass.
The meds I’m forced to take now 4 different ones together as a peptic ulcer protocol/PUP are very risky to my vital organs which are already diseased.
I have to take this protocol for 2 weeks then stop for 2 weeks retest for H Pylori to see if my serious infection has healed. If it has I still have 5 weeks of very strong proton pump inhibitor to take daily.
All of this is so very challenging 😥 but I’m determined to NOT let it beat me without a fight.
From now on I have to tell every doctor/PA that I have peptic ulcer disease. No medicine can be given without knowing this first and it’s all caused by my heart valve disease aspirin protocol of 50 years.
I shutter to recall how much worse I would be if the meds regimine of 4 325 mg aspirin daily added to my daily regimen had worked for my very rare Inherited Erythromelalgia. Had it not caused major joint pain I’d probably be dead by now. 😳😵💫
I have never tried ultrasound but I believe it can help certain conditions Have used Tens for many years years for osteoarthritis but as you can only target one smallish area of you body I have unfortunately found it a bit limited for pain relief for fibromyalgia as it tends to affect a much wider area.
Thank you so much for telling me about your experience , I suspected that it probably would be quite limited which is why I hadn't tried it before but I think it's time for me to start testing out the electrical options just in case they can add some relief.
With Fibro , Migraine, and my EDS , I've learnt over many years of trial and error , that you have to use both meds and all the different types of self care , physical therapy and diet together .
You will know , each thing doesn't make it better on its own , but each can chip a bit of the giant iceberg of pain away to make the day to day more manageable ....like a little army of pain warriors , I suppose.
Take care and let's hope for more pain free days , Bee
Yes I agree anything is worth a try. Have you ever even offered hydrotherapy. I was allowed must 6 sessions but being able to do a prescribed series of exercises in deep warm water really helped. The physiotherapist was really knowledgeable about fibro so knew not to push us too much.I ha e also benefitted from paying privately for acupuncture fro a therapist who is also versed in Chinese medicine. He doesnt actually prescribed me any herbs but has the philosophy of treating g the whole body not just the area that js causing the greatest pain. When I first went to see him I was really desperate and could barely move for the pain. He has also given me good advice on diet.x
Yes , but I only found out I could get it in my local hospital by doing my own research , and discovering it via the local AS support group information. My doctor had no idea when I went in for my referral.
I felt really lucky , as it happened that the physio in charge of Hydrotherapy is one of the only people I have met with an interest in Dysautonomia so he was willing to keep me on the books for any therapy indefinitely . It was only COVID that got in the way of it and it still isn't open again now. It's a shame as we were working together to research the best way to exercise for Dysautonomia with EDS , on land as well as in water.
He had also started to help me get control of the autonomic issues and Fibro pain with a build up of Manipulation Therapy which made me feel really good for about two days a week.
You know you have a good physio when you feel like you have hardly started and he tells you that you've done enough . Working within your comfort zone and building up slowly is the way to go , as he says you don't feel it at the time but you will feel it tomorrow.
I've worked on my own diet adapting it to my needs over the years since having my gall bladder removed , and to cater for my OH , he is Type 1 Diabetic.
Unfortunately , some massage , Chinese and Indian medicines and acupuncture are some of those things that can be a miracle to some and poison to others. For me it's poison.
I get an autoimmune response to needles , I can't take most remedies because they interact with my other meds and only the lightest massage is possible without rebound pain.
That's why I always recommend that people only try a 5 min trial of any therapy and build it up slowly in case it doesn't suit them. Plus , drinking water before and after and resting. Therapies can take the wind out of you.
I actually find a short burst in a steam room very beneficial .... A bit like Lady Gaga but not as glamorous!
Strangely I am the same with massage. I had a short supposedly gentle session and went into a very prolonged fibro flare the day after. I thought it was just a coincidence until I tried it again with the same result.
If I have to have any vaccinations I now brace myself for the consequences, the first COVID was nearly an ambulance jobby as was my first tetanus they decided not to risk the booster. The last two COVID ones weren't quite as bad. I'm not allowed the flu one and a still debating whether to risk the shingles jab. Having had shingles 3 times, the last one leaving me with permanent pain I the rash area and the previous one down the one side of my face and having to go to the doctors everyday as they were worried about my sight I'm tempted. Yes I keep my hydration up as I find it seems to lessen the negative responses.x
Yes, I was given a TENS machine by the pain clinic and it allowed me to just about get through 6 hours of violin playing. But the batteries don't last long and are expensive. I mislaid the machine, so ordered one online that is rechargeable. It lasts for days before a recharge is needed, and it also has some pads that are twice the length of the standard ones. It doesn't take the pain away completely but it gives me a chance! My partner had a bad pain in his shoulder recently and I "wired him up". It took away the pain completely. He's usually very sceptical about things like this. The machine was not wildly expensive either.
That's what I was expecting , and just getting a little localized support when the pain could be caused by activity rather than just Fibro was what I was aiming for. After 25 years of near daily pain I am a realist , I know you can never be 100% pain free with chronic pain conditions , the ideal is to be pain managed ( 75% pain free is a good day ). It appears from the kind answers that it could do what I am wanting it to and just play a small part with other self care and meds to reduce the overall pain.Thank you so much for taking the time to answer , take care , Bee
You can buy from amazon. Nhs let me try one. But had to buy it myself. I used to use it fir the nerve damage in my face. It was good to start off with, but my nerve pain just got worse. But for mild pain yeah they are fine. You should be able to pick one one for about £20 - £30. Hope this helps.
Hi Bee, yes I have tried both. Ultrasound therapy was done usually after PT or at a chiropractor’s office. I checked into buying an ultrasound machine but it was too expensive. I have an old TENS unit which I have used over the years for my back. As far as fibromyalgia pain which is wide spread pain it couldn’t treat the wide spread pain. However both work great on localized pain. I had a new TENS unit but it went MIA. So it work great for back, neck or any other localized pain. I didn’t find it helpful for intense fibromyalgia pain when it is on the cellular level hitting a 10+ on the pain scale. The only think that helps that is pain pill muscle relaxant and a healing meditation.
Thanks so much for replying . I didn't think that it would reduce the widespread pain , localized support for different pains in places were I have Fibro and other Pain problems was what I hoped for.
With nearly a quarter of a century of pain , I learnt a long time ago to have realistic expectations . With a chronic pain issue the aim is to be pain managed , not 100% pain free.
If you can get to the position of being 75% pain free with less flares most of the time you are managing well .
The TENS may just be one of those self care therapies to add to my arsenal helping the other self care soldiers chip a bit off the pain iceberg every day.
I'm just feeling positive that I got few answers mentioning the pain getting much worse or causing a flare so I think I'm going to try .
Hi Bee, I have had fibromyalgia and CFS/ME for 30yrs now. I have tried just about everything I came across that made sense in how it was to help the body heal itself. I was a RN before becoming disabled. Bee I’m sorry if I came across in a negative way in my message to your post. I didn’t mean to make you feel bad in anyway. It wasn’t meant that way I was just trying to help. This fibro fog has made it really hard to function cognitively. Memory is out the door. I sent a package to my stepdaughter and had no memory of sticking her dad’s cellphone in the package. I spoke with her today after going through a box of VHS tapes and found one entitled an evening of music at (or something like that and listed the elementary school) Royall Elementary. This was before her dad I met and got married. So I called her and it was the school she went to. We lost him to COVID back on January 4, 2022. Sorry I got of topic. I was only speaking from my experience and didn’t mean to come across in any negative way. Again that wasn’t my intent. I’m sorry.
I think that is excellent pain management to be 75% pain free with less flares most of the time.
Please don't worry , I didn't think your message was negative at all.I found it very positive and helpful .
It didn't make me feel bad , you helped me feel better.
I'm sorry if my reply made you think I didn't.
Hearing your experience has helped me make my decision just like all the messages I have got.
You are all such a helpful and supportive group.
Thank you so much.
I am so sorry for your loss.
It is not surprising that you will be feeling more tired , emotional , and having more Fibro fog.
Grief and loss has those effects on everyone , but it can feel so much more physically painful for us when we have a bereavement.
I'm sure your daughter and your family will understand if you make the odd mistakes.
I hope that you have got good friends around you and people that you can talk to and help your adjust.
I lost my Mum , my favourite Uncle and an Aunt in the space of six weeks last year.
None from COVID , but , 'the COVID effect ', of them not being seen regularly for their illnesses and their health getting out of control.
My head was all over the place , and the extra jobs and emotion did cause flares in my conditions for months.
It's important to talk and still share memories to help you cope with your grief. If you ever feel down or need a chat you can always message me on the private message board , I would be happy to be your Faraway Friend.
Hi Bee,Thank you so much. I guess the grieving process is not entirely over. Is what is fueling this depression. Motivation isn’t there and not having a good support system off line is nell to nonexistent. I really don’t feel I have a friend to come over and help me. My son lives with me but he stays in his room most of the time. Today is a high pain day and I misplaced my hydrocodone. It was under the sink but couldn’t find it the other day when I was looking for it. Not sure where it got to? I only take it on high pain days.
I’m so sorry for your losses. My mom had Alzheimer’s so we lost her gradually over time as her cognitive abilities declined and she lost her ability to speak. It was hard loosing her but it all started when I was out west and they got the webTV thing. Before mom and I would write letters to each other on a regular basis. But once they got the internet she never wrote back to me. On the phone it got hard because she didn’t say much. This was a good 10-15yrs before she died. Dad and I were never that close. He had his favorite kids my oldest brother and my sister. I felt like the black sheep of the family and my middle brother felt the same way. So when he died of lung cancer I really never grieved. I hope your relationship with your dad was better than mine.
What health problems did your mom, uncle and aunt have that got out of control during the pandemic that the weren’t able to get proper care for? Here in the US we could still see our doctors as long as we didn’t have COVID and wear a mask and social distanced. During the time of the pandemic I was able to get my husband hooked up with South Carolina House Calls where nurse practitioners were able to come out and X-Ray techs came out and take X-Rays of his chest and also do EKG and he was scheduled for a sleep study but ended up going to the hospital were they did a in house sleep study and it was during that time he caught COVID and died. Well the dryer just peeped so need to put the laundry up.
That is a shame for you. Does your son also have any health issues , or is he staying in his room trying to cope with his grief?Most of my family live further away from me and I had to Self Isolate as part of COVID as part of my immunity so I couldn't visit them , people with chronic health issues had to isolate between the start of the pandemic right up to the August , but as a winter wave hit , many of us haven't really started going into the outside world much until a few months ago . Too many people not following the rules , or having the sense to keep some distance while the virus goes through peaks and dips makes it more difficult.
Luckily I am used to spending much of my life, ' Living Life at Home ' , ( I don't use the term Housebound because it is so negative and life can be positive in my circumstances). COVID was annoying , I had finally got my full Dysautonomia diagnosis and treatment after 5 months in isolation before it . I was hoping to get out again , but COVID isolation started the very next day.
Living in the country , I could go outside for fresh air in some beautiful places though.
My Mum also had to Isolate in her sheltered accomodation and with no ability to visit her I could not see that she was getting new symptoms or not ringing the clinic as she should have done. Other family members could only bring her food but leave it at the door.
The NHS would see patients but only if you had a problem that could not be dealt with on the phone. In fact , phone appointments and consultations are still being used now. This has its advantages , you can get spoken to quicker and if you understand you needs get treatment quicker but it has disadvantages too.
Without seeing patients face to face doctors can't see if there is some other problem that needs urgent attention. If my Mum hadn't had a fall she probably would have died at home from the undiagnosed liver problem. At least she passed in hospital with a nurse by her side and me talking to her on the phone. Without COVID and surgeries still seeing patients for routine checks she could have had a few more happy years.
My Uncle died from decline as he had no pancreas .
My Aunt really wouldn't have died in circumstances outside COVID. She is one of those victims of the COVID effect. She fell and cracked her hip slightly , in normal circumstances she would have stayed in hospital for observation but obviously in COVID if you didn't need urgent care the NHS obviously wanted to get anyone out so that they didn't catch it.
The day after she asked to be helped to bed for a nap , when my other Uncle went to wake she had died . She had septicemia in the hip .
In all I know 18 people whom passed during the worst of the pandemic , and none of them had COVID , but the COVID effect caused a premature death for at least 12 of them . These are the death rates that you never see in the government figures or the news.
I hope you can get some more help soon. Grief takes time to process and often our own friends and family don't understand and are always trying to find a quick fix ( a bit like with Fibro!) or they are too uncomfortable to talk about happy memories with us because they are upset by it , or they don't want to upset you.
I know a lot of people that take part in online , as well as face to face , grief groups in their local area. Maybe , when you feel ready , you could look around for one of those that fits you. My Mum actually found her best friend 35 years ago at a Grief group for young widows , some of the best times of her life came from it. At the least it might help you as a tool to manage your feelings or depressing thoughts when you feel ready to try something new.
Always here if you want a chat , if you press on my name at the top of this reply you can go on my profile , follow me and then message me on the private message board to chat or talk about things you mightn't want in a post.
Gentle hugs ..... Bee
P.S. And I'm sure your hydrocodon will turn up when you are looking for your socks , mine always used too.
I have a big box with all my meds in now which I force my self to return things to after I have used it so I don't leave them in odd places.
And an old med bottle with one emergency dose in of drugs that I might need unexpectedly which I take everywhere.
I also have one of those pill boxes with my days drugs in it so I don't forget a dose .
Hi Bee, It showed up today when I was setting up my med tray. The hydrocodone was filled from the local pharmacy which prior too was express scripts so it was in a smaller bottle than what I was looking for. Yes I have mine set up in a med tray so I don’t forget but occasionally I forget and will have a memory of taking all my meds but then the next day after a night of vivid dreams I will see my night meds are still in the slot from the night before.
Tele health is still around here as a result of the pandemic 😷. I took a test from the neurologist and have been trying to schedule a telephone visit to go over the results but the office is not returning calls nor answering their phone calls. Frustrating, very frustrating. I have called them twice…well 3rd time was Friday early afternoon a little after 1:00pm and just got their answering service. So will have to call them again on Monday. I don’t know if he got the test results. It didn’t give me an option to email him after taking the test on line. The test when done just said thanks for completing the assessment. No results, no option to sent an email. I was going to say brb because I just thought maybe I could email his office but then thought I would loose this screen. I’m not that tech savvy. So will send this through then go back to my emails and see if I can send my neurologist an email then find my way back here. I took the test last Sunday. Brb an hour or 2 later…..after a long ordeal involving googling the office, searching the App Store, fighting with the patient portal, calling the office talking with the after hours person and going though my emails I found his email so was able to sent him an email.
No my son doesn’t have any major health problems like fibromyalgia or CFS/ME. He has GERD and IBS which acts up from time to time but he is working at JC Penny’s close to full time. He says he doesn’t have depression but he hibernates up in his room most of the time on his computer 💻 and playing games. He did that before my Husband’s passing. Well I guess after all that frustration in trying to contact my neurologist I need to start fixing dinner.
As electrotherapy it can set off seizures, does/would me....
The downside CM1EDSUK mentions is true for the basic TENS unit, that it can only treat small areas. But you can get "suits" = conductive garments you can wire it up to, for large areas. medi-stim.com/electrodes/cg...
The are smaller versions like a "microcurrent" unit, as even the lowest level can be too much for some. Or the paingone TENS pen, but that treats an even smaller area than the TENS unit.
It doesn’t just work 1) by nerve stimulation (competing sensory neurons at the pain perception gate), but also 2) by the release of endogenous opioids.
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