It’s been greater than three years since I began pursuing help for the ache I expertise and nonetheless I’ve nothing from the NHS. I am going to hydrotherapy as usually as I can, though I’m nonetheless ready for the second NHS Hydrotherapy appointment to evaluate the workouts as I really feel I want a more durable routine and have been ready virtually six months for that. It’s useful and I do usually get pleasure from it however I’m nonetheless in ache a substantial quantity of the time. My GP has mentioned a number of instances that she’ll attain out to the Ache Clinic however we nonetheless haven’t heard from them; I haven’t had contact with them for the reason that appointment in November 2021.
This publish spans from April 2023 to March 2024.
SINCE LAST UPDATE
For the reason that final replace, I had durations of disagreeable ache however nothing worse than my normal ranges of ache. I often skilled it in phases the place it received dangerous after which receded to all however nothing. I had days the place I felt like the one downside was muscle weak point fairly than precise ache (regardless of the hydrotherapy) however more often than not there was some form of ache in some a part of my physique; I simply didn’t at all times discover it as a result of I’m so used it at this level. Generally I overlook to take painkillers as a result of I don’t recognise that what I’m feeling is ache.
JUNE 2023
Every thing was regular – I used to be nonetheless ready for an appointment with the NHS Hydrotherapy Division and my GP was nonetheless chasing up the Ache Clinic – till I managed to noticeably damage my again. I don’t know what I did. I actually don’t. I used to be sitting on the bottom, taking part in with my neighbours puppies, after which, once I tried to stand up, my again was so painful that I may barely transfer. At first I figured that sitting on the bottom with none help for my again had simply resulted in a strained muscle or one thing and that just a few hours on my warmth pad would type it however hours later, I nonetheless thought I’d collapse or scream or throw up if I a lot as turned barely to at least one facet or the opposite; it was horrendous. I believe it was actually the worst ache I’ve ever skilled in my life; on the very least, it’s within the high 5. It was worse than the cracked rib, no query.
Once more, I assumed just a few days of the warmth pad and painkillers would, on the very least, get the therapeutic going however virtually per week later, I used to be nonetheless barely capable of transfer and the muscular tissues spasmed a number of instances that resulted in me sobbing on the ground, unable to stand up – really bodily unable. We needed to name 111 a number of instances due to the times and instances of these moments (and since I genuinely felt like I couldn’t transfer and subsequently stand up and go to the physician). I used to be taking my strongest painkillers however they weren’t making that a lot distinction and I may solely take them for 3 days at a time; I dreaded the times once I couldn’t take them. Plus my sleep was horrible as a result of the ache woke me up each time I turned over.
Ultimately I needed to go to the physician and he was satisfied by my ache right away, provided that I used to be hobbling like somebody who’d simply celebrated their hundredth birthday. He was understanding and sympathetic and advisable medicine for just a few weeks earlier than reassessing. He ran by means of the choices (I’ve already tried most of them and located them ineffective) and virtually prescribed me Tramadol (a drug my arthritic canine used to take, which amused me) however then he found that it could’ve interacted badly with my antidepressant, Phenelzine (one thing I’d already assumed earlier than he may even look it up). So he gave me a mix of weaker ones and mentioned that, if these hadn’t labored in a few weeks, then we’d revisit and check out one thing totally different.
I needed to maintain my motion extraordinarily restricted however I additionally used a again brace once I did have to do issues. It wasn’t essentially the most comfy factor however the help allowed me to do a bit extra and dwell some life that wasn’t confined to the couch. The ache killers helped considerably, a minimum of on the peak of their effectiveness, but it surely wasn’t till a physiotherapist we all know advised a TENS machine that issues actually modified (this was about three weeks after the ache began). We hooked up it to my again, turned it on, and the reduction was so overwhelming that I assumed my knees would collapse below me. The ache was gone. Nicely, gone the place the pads have been hooked up and it was superb. It’s not an ideal system – though, if I purchased a ridiculously costly one, it could be – however with that hooked up to me, I may transfer round, I may lean, I may really do issues. And I wasn’t continually exhausted and depressing from the ache.
JULY 2023
Greater than a month after I initially damage my again, it was nonetheless troubling me, though under no circumstances to the identical diploma because it had been; between painkillers, the TENS machine, and slowing shifting an increasing number of, I received again to virtually full motion with out ache. I nonetheless needed to be a bit cautious about stretching, and twisting, and lifting however, for essentially the most half, I used to be again to regular – my regular, a minimum of. As a result of my regular virtually at all times entails some degree of ache in some a part of my physique.
It was across the month mark that I received again to swimming and hydrotherapy and I used to be vaguely appalled by how a lot stamina I’d misplaced within the time since I’d final been going to the pool persistently (which had virtually been two months between the again ache, my journey to Germany, and a closure on the pool). I needed to work actually arduous to not overdo it and return to my outdated routine right away, build up once more, but it surely was extraordinarily irritating. My work within the pool did irritate my again a bit and it took some TLC after every session however very, very slowly, issues began to get again to regular.
In mid-July, I additionally began physiotherapy, making an attempt to construct up the power and stability of my muscular tissues, particularly my core, as is advisable for Hypermobile Ehlers Danlos Syndrome (she mentioned some actually fascinating issues about hypermobility – particularly because it utilized to train but it surely was additionally fascinating typically – and I couldn’t await this publish to speak about it so I posted about that right here). It felt like a considerably humiliatingly ‘straightforward’ routine to be fully exhausted by but when it’s going to assist with the ache, assist me swim extra, assist me survive the Taylor Swift live shows subsequent summer time… I’ll do no matter it takes. The early days of the workouts have been robust but it surely was form of thrilling, figuring out that I used to be shifting ahead little by little, slowly getting nearer to my targets. I can’t keep in mind ever feeling robust or in full management of my physique and whereas I don’t really feel that means at this level, I can’t assist the little surge of hope that every one of it will get me there sooner or later.
I additionally examine a charity swim in September and that received me actually excited. I swear, virtually all charity challenges are health associated – at all times charity walks or runs – which I discover deeply irritating as a result of I wish to assist and be concerned however I simply can’t deal with these; I can’t even stroll very far with out it feeling like there’s glass grinding in my joints. However a swim is ideal. And sure as a result of it’s in assist of a charity, it’s very accessible, the thought being that you simply select the size of swim that can problem you with out pushing you to an unsafe or uncomfortable level (one of many lengths is getting within the pool, which I believe is unbelievable, as a result of, for some folks, simply getting in a pool is a large problem). Throughout my subsequent session on the pool, I examined myself to see how far I may go earlier than it felt like I would remorse making an attempt to do extra, like pushing more durable could be problematic, and that turned out to be simply over 400m. I don’t suppose that’s all that dangerous, contemplating I haven’t exercised persistently in over a month. So I may do the 400m size swim in September simply; the following aim is 800m however who is aware of what’s going to occur between every now and then…
AUGUST 2023
I continued engaged on my hydrotherapy and physiotherapy (though I needed to take per week off at one level when an ear an infection completely floored me – ache, deafness, and stability associated issues made all of it however inconceivable to stroll, not to mention do any kind of coordinated train). I had my second physiotherapy appointment and that went nicely; we elevated the resistance on a few of the workouts and added just a few extra. My muscular tissues began twitching after I began physio (which initially actually freaked me out) earlier than subsiding and that began once more with the rise however now we all know why it occurs, it’s simply mildly irritating.
I additionally examined how far I may swim, a couple of month after that first experiment, and I managed virtually double my unique distance and managed it simply; I may’ve gone additional had I not run out of time on the pool. I’m actually pleased with that progress, of the progress I’ve made in each. It’s been so lengthy since I may even do that degree of train and I can see it translating to the remainder of my life, even when it’s gradual going.
I wrote about this right here however I used to be additionally recognized with Fibromyalgia. I gained’t rehash it, particularly since I’m nonetheless unsure how I really feel about the entire expertise, however I don’t wish to ignore it, provided that one of many essential traits of the situation is ache. It’s simply that I don’t understand how the diagnoses of hEDS, Persistent Fatigue Syndrome, and Fibromyalgia match collectively and, after all the things, I’m so deeply cautious of (and triggered, to numerous levels, by) docs. Anyway. In principle a minimum of, that’s a part of the image.
SEPTEMBER 2023
September was a little bit of a wild experience that I may’ve accomplished with out on the entire. I had ongoing shoulder and elbow ache (little question resulting from my repetitive hair pulling, excruciating decrease again ache for over per week (which just about persistently disrupted my sleep, waking me up each time I attempted to show over, so I used to be drained and unproductive and annoyed too), and a number of other days of terrible knee ache, though that was most likely my fault: I believe I overworked it one night time when doing my hydrotherapy workouts and, had I taken the following day to relaxation it, it most likely would’ve recovered shortly however I ended up going to London (and having an virtually meltdown on the road), which I’m certain solely made it worse. In order that wasn’t nice but it surely wasn’t the worst it’s been so I’m not complaining (a lot).
I had my second hydrotherapy appointment and the hydrotherapist was each impressed and happy by my dedication and my progress, which was very good (and inspiring to listen to – typically it feels arduous to inform whether or not something is definitely altering so it’s comforting to listen to from somebody who actually is aware of that I’m). We mentioned the train I’d needed to reduce as a result of it damage my arm and he or she gave me a brand new one which had the identical ultimate consequence however wouldn’t irritate my elbow joint. Then she gave me about ten new workouts to work on, which I’m excited to get began on. They’ll be working totally different elements of my physique so it’ll be fascinating to see what that appears like and what which means for my stability and stamina (if I’m capable of inform). I don’t get any extra appointments so hopefully these two workouts will maintain me going, a minimum of for the foreseeable future. Given my historical past, I wouldn’t be stunned if I used to be again in some unspecified time in the future with a distinct downside that wants help; my hEDS is simply the present that retains on giving. Throughout the remainder of my pool time, I’ve additionally managed to swim a kilometre and do it fairly simply. I assumed quite a bit concerning the charity swim I’d been planning on doing and finally determined that, as an alternative of the one I’d initially deliberate to do, I’d fairly do one for Thoughts, for World Psychological Well being Day. That may be a very significant technique to rejoice my progress and do one thing that helps a trigger actually near my coronary heart, particularly since I can’t do the extra conventional charity runs.
I additionally had one other physiotherapy session and my physiotherapist was additionally actually happy with how I used to be doing; she commented on it the second I walked into the room, that I used to be standing higher. As I mentioned, I discover it actually arduous to inform if issues are altering so the truth that she may see it that instantly was good (and fascinating) to listen to. We talked concerning the ache in my shoulder and elbow and he or she massaged each, which felt superb; having felt each of the joints, she mentioned she thought I most likely had Bursitis in my shoulder and Tendonitis in my elbow. We went by means of my workouts and he or she gave me a brand new train rather than one which was hurting my elbow. She additionally gave me a pair that will strengthen my shoulder and elbow. I began doing them right away and I may undoubtedly really feel them working!
The one different issues of word, I assume, are that, one, I had all the blood checks accomplished that the physician (the person who’d recognized me with Fibromyalgia) had requested and, two, I had my COVID jab (my fourth vaccination, I believe), which had my arm hurting for a number of days. I needed to decelerate on the physiotherapy (much less so the hydrotherapy) but it surely wasn’t lengthy earlier than I used to be again to my regular routine.
OCTOBER 2023
I began October, focussed on swimming with a view to do my 5km for Thoughts: the plan was to swim 1km per swim over the course of the week main as much as World Psychological Well being Day. After which, all of a sudden, it was time to do the factor. After the work I’d put in, it really wasn’t too tough (though I gratefully took a while to relaxation afterwards) and I actually loved it. And household, buddies, colleagues, and strangers generously donated over £600! I’d love to do one other one in some unspecified time in the future however I don’t wish to push myself too arduous and I actually don’t wish to benefit from my neighborhood by repeatedly asking them to donate when the price of residing disaster is hitting everybody actually arduous. So I’ll select my occasion and time of yr fastidiously.
As a lot as I beloved the swimming, I had actually missed my hydrotherapy workouts, which I’d needed to neglect to construct up my stamina after which get the 5km accomplished in 5 totally different swims. So it was very nice to get again to them and construct within the new workouts I’d gotten from the hydrotherapist. I began feeling them in my core right away, which was very satisfying: it’s proof that the workouts are working the muscular tissues they’re purported to be.
NOVEMBER 2023
I continued with my physiotherapy and hydrotherapy, though ache in my hip did make it arduous and I needed to cut back the quantity of workouts I used to be doing. However I did lastly get some compression socks to assist with my POTS and I undoubtedly felt the distinction when standing or strolling. They’re not life-changing however I’ll take something I can get.
In any other case, issues have been okay, though I did fall down whereas strolling alongside the South Financial institution in London. It’s all concrete so it was a fairly arduous fall however, at this level, I’ve realized how you can fall in order that it doesn’t do a lot harm or damage an excessive amount of; often I simply really feel a bit shaken up. I used to be with household and a number of other folks came to visit so I used to be nicely checked over however I used to be fantastic.
DECEMBER 2023
I used to be having severe ache in my again, on and off all through the month, which did restrict my capability to train – and to only transfer in any respect. The exhaustion of being in ache made shifting my physique arduous too; it wasn’t a enjoyable time. Between that and Christmas, New 12 months, and the related household commitments, I ended up by accident taking a few weeks off anyway.
JANUARY 2024
Within the new yr, I slowly received again to my swimming, hydrotherapy, and physiotherapy – with an up to date routine. I additionally began to do a little bit of indoor biking, though that was quite a bit more durable. However it’s all, hopefully, going to assist with build up my power and stamina and stability. It did all grew to become a lot more durable work once I modified the medicine I take for POTS, switching from Propranolol to Ivabradine as a result of all of my signs received worse: I used to be continually out of breath and shaky, unsteady and exhausted. It was a tough changeover. I additionally fell down whereas in London once more. This time was on grass so it actually wasn’t an enormous deal bodily: it didn’t damage in any respect however I do at all times really feel shaken up, like my skeleton has been rattled round inside my physique. It additionally makes me really feel much less safe, much less in charge of my physique, which isn’t a pleasant feeling.
I used to be nonetheless scuffling with ache in my again, in addition to ache in my hips. Oh, and my elbows. It stopped me from doing my workouts on and off for a number of weeks, which was irritating. I’ve informed each my physician and my physiotherapist however no information but on whether or not there’s an issue – aside from normal persistent ache – and what to do about it.
FEBRUARY 2024
The again ache solely received worse and was dramatically limiting my workouts in addition to my normal motion; it was additionally waking me up at night time. I used to be virtually continually on the one painkillers that appear to make any distinction however I can solely take these for just a few days at a time earlier than I’ve to take a break. That basically sucks as a result of then I undo all the good – all the restoration – that the time on painkillers has allowed me to do. So it’s a by no means ending cycle with none progress. The physiotherapy and hydrotherapy that I did handle to do have been actually arduous and never satisfying in any respect.
So it’s been a yr of tough ups and downs, steps again and ahead and again once more. I’ve had some extra help this yr however I really feel just like the ache has been worse and persistently so, significantly in my again. I don’t actually know what to do at this level however nothing appears to assist it. I hoped issues can be higher by now (particularly as a result of I wish to actually be capable of benefit from the Taylor Swift live shows arising) however they really feel worse, a minimum of to me, than they did in the beginning of the yr.