Hi guys and gals,
Do any of you have days where the pain is so bad you are literally stuck in bed? I’m so fed up of it now
Hi guys and gals,
Do any of you have days where the pain is so bad you are literally stuck in bed? I’m so fed up of it now
Bles you it’s so annoying. I too have multiple conditions and they just seem to be in a constant flare up. Maybe this cold wet and windy weather isn’t helping but iv been in bed since Monday, only moving to go to the loo and let my dog outside. Bless my partner he’s been great and I think he’s enjoying his own time downstairs far too much when he’s home from work lol as he had his rock music on all night haha knowing I hate it with a passion😂😂😂 x
I speak to my mom every few days on the phone and see her every couple of weeks as she lives an hour away. Friends have basically disappeared since I moved over a year ago and I haven’t made new ones local to me because I just can’t get out enough to do so lol. That don’t bother me too much my partner is great but he don’t really understand things like others in the same boat do.
He knows I’m on here but he isn’t really interested in looking I think it gets to him knowing there’s people a lot worse than me and that I will probably get worse if that makes sense he likes to be a little naive to it. He even said yesterday there must be some surgery you can have to sort this even if it’s a case of spending loads of money and going to a top surgeon in America etc there
Must be something we can do. He doesn’t really realise that surgery isn’t an option for these kind of illnesses xxx
Hello. Im so sorry that you are in so much pain. I do not know what is causing your pain but if it is nerve damage, neuralgia, neuropathy or basically any nerve pain. There is an amazing hospital that truly can dramatically reduce or relieve all your pain. I had severe nerve damage and intercostal neuralgia and most days could only get out of bed for an hour or two on a good day. This wonderful place gave me my life back. It is The Dellon Institute in Baltimore Maryland. Its right by John Hopkins. Look them up or do research them and you can see what they can do for nerve pain/nerve diseases. This is the best hospital and nerve pain relief clinic in the US, possibly the world. Before I heard about Dellon Institute I was actually planning a visit to Maastrict UMC in Maastrict NL. They told me about Dellon Institute. I would have gone anywhere to be able to function and have a life again. My Neurologist contacted them for me and I was able to have a consultation with them within two weeks. They looked at my medical records, looked at all my MRI results, petscan results, nerve conduction results and spoke at length with my Nuerologist. I had surgery 2 weeks later and walked out of there 2 nights later. They gave me my life back and I have been so grateful for their help. I was on Oxycontin, oxycodone, amitriptyline and diazepam and that barely helped my pain. Now I only need an oxycodone or diazepam 3 or 4 times a week and usually less. I hope this info helps you and I will keep you in my prayers.
Hi thank you so much I am in the uk, part of my issue is that I have sensitive nerves but no actual nerve damage but the main problem which I found out from my chiropractor yesterday was that because I have ehlers danlos syndrome and a curve in my spine, my spine had most likely been moving around in ways it shouldn’t and my body acted in a defence way by tightening all the muscles in my upper back to the pain my upper back actually doesn’t move and my lower back had been doing all the work hense all the lower back pain. He’s going to work on trying to loosen the muscles around the curve in my spine ( it’s going to take a lot of time and pain but it’s worth it) But my body is going to act against it and try and tighten them again so it’s going to be a long old process
To get to a point where my muscles are looser but not too loose than my spine can move outside of its normal movement and it’s all made more painful because of my nerves. I had said to doctors and specialist for years that I was sure it was due to the curve in my spine and every time I was dismissed so I’m rather angry at the fact that if they had just looked at it or felt it they themselves
Would have felt how hard my back is due to how tight the muscles are and that could have potentially saved me years of agonising lower back pain
There is also some great help/guidance and support on the EDS part of healthunlocked. It really sounds like the cause of your pain needs treating rather than the pain just being treated as a symptom.
Sorry, I know I sound like I'm being opinionated but it's been a long day, don't mean to be bossy but I have been where you are and know how absolutely miserable it can make life.
I have recently seen a chiropractor who has assrrtained the pain in my back is due to my curvature and spine moving so my body trying to protect itself and tightening all the muscles around my upper spine to stop movement however this has resulted in my upper spine not being able to move at all and all the pressure being on my lower spine so over time he is going to try and get those muscle to release. I feel like doctors as so reluctant to go to the relevant specialists now and they just say take this that and the other and attended the pain clinic without actually getting to the root of the issue
I had to be quite assertive but was referred to am EDS specialist. I have multi-organ problems with EDS and the multi-disciplinary team approach has mean a massive improvement in my condition. I still have pain but things are just better and I've been really helped by the Ehlers-Danlos website too.
In fact I was advised by my rheumatology team to avoid any joint manipulation.
I am just putting a few thoughts out there. I think the real problem is that GPs just do not understand the condition at all, hence EDS patients have to become experts in their own care.
I really hope things improve for you.
That’s ok you should read back on my posts half of it is typos lol medication brain I’m putting it down to haha. Yes your are right there is very little information given to gps regarding the condition I’ve even heard stories of gps saying it doesn’t cause pain 🙈 we wish! Like you have have other issue with my heart stomach bowel etc along with the obvious. My chiropractor won’t be doing any manual manipulation just a technique to loosen my muscle to get the top half of my back moving again and I’m going to stick with it and see how it goes even if I am still in agony 2 days after but hey my pains left me bedbpund for 9 days before that so what’s another 2 lol I’m hopeful and I am going to push my gp a lot more, I may however give them time to calm down as I had a bit of a mental breakdown the other day and I’m surprised I’m not banned from the surgery as I had a right screaming, shouting and swearing session at the doctor over the phone 🙈 I was in a right state and was asking for help only to be told I’d have to wait 2 weeks for an appointment so yeah I lost my absolute s””t. There was more to it as I’d explained mental health related issues and needed to see them or someone there and then kind of thing but she wouldn’t budge and well yeh my anger took over. I have however emailed and apologised now that things have calmed down but also told her it was unacceptable when I was clearly in a right state and could have done anything etc but anyone enough of that! I will be asking for referrals etc and I too find the eds website very helpful.
Yeah iv bought some
CBD muscle balm to rub in my joints and I must say it’s a miracle cream. It’s not so great on my back but my knees and ankles I really do see an improvement in within an hour of rubbing in the creams. He’s great he don’t understand and he gets frustrated sometimes but he’s supportive and demands me to bed when he can see I’m suffering although I’m
Sure that’s a ploy so he can watch his football or listen to his music haha
Yes I have. Not a fun kind of way to stay in bed all day. I can think of many other more fun ways besides pain. The flu or a cold is better reason to be forced to stay in bed over pain. 🙁 bad pain days suck!
Sorry to hear that you are going thru this... sucks large. Hope you can get some relief so u can get up and resume living outside of bed. 🌷😊☀️☕️
Ya Netflix gets a little much for me... who knew there were so many “progressive” superhero’s eh? 🤨
I’d switch to you tube personally... they have free movies, documentaries and some old tv shows at least. No commercial breaks either 😊
CBC (my version of BBC) has shows available on their website so it’s more programming variety with a spoonful of progressive crap thrown in at times but it’s different shows at least...
Hope your pain reduces so u can manage a hot bubble bath and to make it to a lounger outside of your bedroom at least... anywhere but there eh? That’s my motto ... anywhere but bed when pain is bad so I can pretend it’s not so bad as I’m not in bed... mind over matter a bit?!?
Exactly and I’m gonna take you up on that bubble bath when my partner gets home I’m gonna get him to help me into a muscle relax salts hot bubble bath and hopefully it will ease things off a bit. Funny you should mention YouTube I used to watch living the old true movies on there so I’m gonna give that a go. I’m determined to be out of bed tomorrow even if I’m just laying on the sofa under my fluffy throw ( it’s a constant addition to the sofa lol) that will make things a little better and have a change of scenery at least.
Hi there..it must be awful for you but try reading a book called the Brains Way of Healing by Dr Norman Doidge and Unlearn Your Pain by Dr Schubiner . They talk about how you can heal your pain by various techniques that allow the pain pathways in the brsin to re organise themselves..its really interesting .
Hi yes they do here as well and for the most part I try and keep as active as possible however some days are just awful and I need the rest. I find that moving bout when I’m a serious flare up makes my pain worse and last longer, whereas a couple of days bedrest keeps the pain down and the flare to pass quicker. I guess everyone’s different and we need to listen to our bodies to determine what’s best.
I totally understand your frustration I suffer more bad days than good. I beat myself up for thinking I am lazy when I have been told many many times that if my body tells me to rest, then I should rest. Its great that you have a partner that loves you and does his best to support you. Hope you are feeling ok this morning. I had an awful night.
It’s a nightmare iv literally been in bed for a week because the pain to stand and move about is agonising just going to the toilet is too much effort. Iv booked an appointment with a chiropractor for tomorrow evening so whilst it may be agonising whilst they do what they do I’m hoping it gives me some relief just so that I can get on with some house work and cook my partners tea when he get in. I hate the fact he works
10 hours a day and then has to come home and cook us both tea
I remembered how reluctant I was to go to the chiropractor but I got desperate. While they "do what they do" it hurt only a little. But after my first visit it hurt like hell. There was just too much going on with my spine. And it lasted for two days. But it did help a bit so I started going regularly and It hurt less and less after spinal adjustment. So do not give up after first visit,
You should think about relaxing tense muscles (massage), especially at the beggining - adjusting the spine will change your posture a bit and your tense muscles will limit the effect of it. So ideally it should be like that: massage of the back, neck and chest, then chiropractor visit, rest and exercise to work on the symmetry. Few sessions like that can make a really nice difference. The visits alone can help temporally, but your muscles will pull your spine to the previous position.
That is from my own experience and advice from my chiropractor, which gave me more attention than any doctor ever. So sorry if I overstep with my advices
I hope it will help you ease your pain
That’s great advice thank you very much, yes I am at the end of my tether now the doctors aren’t really doing much at the moment and seem to not care about the curve in my spine which I’m sure is responsible for half my pain so it’s going to be refreshing getting someone else’s opinion and advice. I expected the initial pain for a day or two but I can deal with that if it helps in the long run lol
I did not have a luck with any doctor or physiotherapist even, so it took a lot of time and efford to realise some things and how to keep myself in as good condition as it is possible with my body.
Yes, you are right. The curve of the spine (both hyperlordosis/hyperkyphosis and scoliosis) impair the mobility of the spine, so it increases the burden on the spine, nerves and muscles. That also cause muscle tension (along with the tension caused by feeling pain) and they keep it curved. And the circle goes endlessly making things worse and worse.
So relax, work on the symmetry and balance in your own pace and make a truce with your pain (which for me was the hardest, to be honest)
I am cheering for you!
Thank you so much my appointment isn’t till 6.20pm it 2pm here now so I’ll let you know how it goes. Your advice has been amazing and yes I have kyphosis which I am constantly saying to the doctors is probably the root of my pain even the lower pain because of the preassure on my spine but they dismiss it and dismiss all other conditions causing it and have told me it’s a sensitive
Nerve issue as nothing showed on mri it’s frustrating and been unbearable the last week hence the staying in bed it’s
Starting to ease a bit now and is more under control with my meds but still painful as well as everywhere
Else lol so I’m looking forward to seeing what they say tonight
If you have hyperkyphosis then I bet you also have very tense shoulders, neck and chest. That is something that you can massage yourself if you do not have a possibility to go today for a massage. Try something called kneading and painful but effective (and my favourite) firmly grabbing and pressuring with the thumb placed on the anterior part of it and the rest of the fingers at the backside of the upper part of trapezius, for at least few seconds, a few times (if you google those two thing you should find tutorials explaining it).
Because of the deepening of my lordosis and kyphosis, my cervical spine developed kyphosis, when it should have natural lordosis. That caused paraesthesia with headaches, dizziness, nausea and a whole spectrum of hands sensation. So I also advise you to keep extra attention to your head position (not leaning it forward) and neck tension. I hope you did not get to this point YET, so you can avoid it or at least delay it
I am waiting for the news
I have a massage machine so I’ll use that in a minute whilst I read my book thanks for the advice it’s weird you say that as I do notice I put my head forward a lot and it feels off when I move it backwards and iv been getting a lot of headaches and breathing issues ( had tests all clear apart from mild asthma) I will mention all this to the chiropractor thank you and my shoulders are very tense and physio said my spine is very stiff which is weird as I have Eds which causes joints to be a lot looser than usual
oh, same condition then (tho, I also have a few other)
Yes, it is the pattern that follows the same way in every unattended case. And it is stiff because of the muscles that are not balanced with your joints and the fact that pain is uncomfortable and stressful. With hypermobility just stiffing the muscles won't help. If you want to cooperate with it I advise to get to know every muscle in your body and monitor their strength and elasticity. The pain will not disappear, it still will be gradually worse, but not as fast and not that unpleasant.
So do not give up
Best and most informative place I have been he said very similar to you. My joints are more hyper mobile than I thought and in more places than I knew! They kyphosis is causing a problem but he thinks that as the years have gone on my spine has been moving around too much and my body has tried to cure the problem itself and now the top of my back don’t actually move because of how much the muscles has tightened and my lower back is doing all the work genes the pains been so bad there. He said Iv been doing right by resting when it’s to painful as resting will obviously make the muscles looser so it can’t cause any harm. It’s not going to be a quick fix and it’s going to be a painful road to get to a manage pain level but I’m prepared to give it my all. I’m going back in 2 weeks this gives me time to get out of this flare and any other agro his treatment may have caused as he did some lighter treatement today to see if he could loosen the muscles at all and they did respond but only slightly. I’m so glad I went as I have said for years could the pain be caused by pressure of my curve and every doctor has dismissed it when in fact it was all linked and a simple “ maybe let’s look into it” could have effectively saved me from years or debilitating pain. Thanks so much for your Advicw. I also told him about my massager and he said that was perfect to use and to do so for half an hour a day if my pain allows so I shall do. As for now I have pains in places I didn’t know existed lol so I’m off to bed. Thanks again for your advice x
Yeah, resting is very important part, especially after those visits and not overdoing, so listening what your own body tells you, not the doctor, friend or me xD Just to keep working on symmetry, balance and stabilisation, as you feel is right for you.
I am very happy that the chiropractor turned out to be a really good one and thinking long term, with the individualized approach. You are very lucky.
I would be very happy if you gave me an update in a few weeks how that works for you and your thoughts, maybe it would be helpful for me as well. I've never talked with anyone with the same problem (so hypermobility) going such similar path to mine
Of course hunni I’ll definitely keep in touch and I haven’t really talked to anyone with it either so whatever advice we can give each other about what works best for us is definitely great in my opinion. The session itself was surprisingly not that painful possibly because he was pushing about higher up my back so it took my mind off my lower back pain that was worse than his prodding lol it’s rather tender now and I’m expecting to wake up pretty sore tomorrow but it’s all worth it if the end result means my pain will be more manageable as I’m under no illusion that I will ever be pain free but just to be able to manage it and love relatively normally would be great
hmm maybe it was as painful in my case because I went to a different chiropractor for the first time. He was the 'production-line' kind, so he did not pay any attention to what I was telling him as "he already knows"... I changed it to this good one that stayed with at my second visit (tho it still hurt after just not that much xD ).
Waiting for the details about this massage machine of yours from the post above
It’s called a shiatsu body massager I think you can use it all over your body, if u use it for your back it has straps to put your arms through to pull it right and under the cover there are quite large hard massage balls that rotate it different directions and at different speeds to give you a good massage be warned it does hurt at times as it’s quite harsh but you feel the benefits quick soon after I’ll find the proper name and brand in the morning as I’m just about to nod off lol
Well it’s 6am managed 4 hours sleep and got pain in places I never knew existed lol. He did tell me I’d be in more pain for a day or two because he’s trying to break my bodies natural cycles of tending around my spine to keep It aligned but it feels like mike Tyson’s done 7 rounds on my back lol I’m trying to see the positives though as I know it’s all going to be worth it in the end, and at least be warned me of it so it hasn’t come as a surprise lol
exactly, and as your body is changing you should work on the weakened muscles so they can hold a spine in a right new position and have more stable result after a few visits. After resting, when your body is ready of course I can clearly remember the pain from that day even if it's been at least 3 years...
I am glad that despite this pain after, you are looking forward to go there regularly.
I cheer for your fight!
How long did the additional pain last for you? Iv also noticed that now if there’s the slightest cold feeling on my back the pain is made even worse lol so whilst I normally ( when in a flare and bad like I am now) lay in bed in just a vest top or sometimes no top I’m now laid in bed with a big thick onesie on along with the heating 😂😂😂😂 pretty sure I’ll be regretting that in an hour or 2 when the house in boiling lol
2 days that I am sure it was a nightmare and after that, I can't say because it was more than 3 years ago. I probably remember only this 2 days cuz when it was subduing it was too relieving and I felt that it made a difference xD too much happened and changed in this time, so the different episodes just overlapping in my memory (besides this first visit)
I know I could do anything. I couldn't lay down in ANY position, I couldn't walk, I couldn't stand, raise my hands, so most of the time I was just trying to stand, stepping from foot to foot with numb legs. And imagine that I went to another city for that so I stayed in the hostel... oh boy I did not care at all about weird looks towards me nor the questions if I am ok
I had a strong, blunt/dull pain (I am terrible at naming the pain, but I think it fits) in the whole body, the headache that was nonsensitive for ibuprofen (which usually helped) terrible dizziness and nausea, numbness and stiffness of the limbs and also "cold spots"... sound terrible but I was "used to" all that, not to this degree tho. But I noticed that it helped with my paraesthesia (mostly tingling, "pricking" as they call it) to my arms and legs and tension of course. As the initial time ended and the visits became regular, I noticed the influence of burdening my cervical and lumbar spine to the usual symptoms that I mentioned. They were basically constant before, so difficult to connect with specific activities.
So I started to pay attention to my movement on every occasion and I managed to lessen those symptoms. As my problems got gradually worse I had to control even the simplest and most basic movements. Now the most exhausting activity would be walking as I have to think about every part of my body from head to toe - literally xD And as my time of walking now limits to no more than an hour (with short breaks) I think about starting going out with orthopaedic corset... I am a stupidly proud person that prefers to suffer than help myself with any kind of support... I am working on changing that - without results for now 😂
Poland. I know my grammar is far from perfect and I make a lot of typos (which grammarly helps me with <3) but as I daily use academic, formal written english, it kinds of influence my casual speaking too much xD And I am messy with explaining things regardless the language 😂 so I at least want it to be typo-free to be well understood
Did I mention the 4 hours sleep haha that is about average at the moment so I don’t do very well when it comes to resting positions I am constantly changing. It seems to be easier if I lie half on my side and stomach is that makes sense and I have a v pillow and turn it’s wide ways and kind of cuddle it to reach that half stomach half side position. I cannot lay on my back as that kills I can not loe completely on my stomach because it causes a burning pain so I literally toss and turn from side to side all night sometimes laying with your head and shoulders raised helps if you can sleep that way it’s just a constant battle for comfort of a night I don’t know how my partner sleeps through it to be honest lol
wow, girl - you are my spine-pain-twin 😂
I do not have a v-pillow, but I arrange my pillows (I have a few different and I choose them depending on how I feel at that day) basically the same way in the " half stomach half side position" and that is how I sleep... nice to know that I went the right way.
But - before I will set myself to sleep I like to unburden my thoracic by (painful but in relieving after kind of way, if you know what I mean xD ) setting one harder pillow under my upper and middle thoracic region, with head bent back a little (if your cervical is still stiff I recommend to keep it straight or how it is comfortable for you) and the other pillow low under the buttocks (not hips, just as the thigh starts) to straiten the lumbar region and knees bend 45*
I sometimes also lay fully on my stomach but ONLY with the harder and bigger pillow supporting the lumbar region and only for a little while.
I am totally lost in the sitting positions I've never found a single "ok" one. The only thing that kinda helps is supporting the lumbar by a small pillow (at home) or scarf/coat when I am out. I am constantly fidgeting while I sit which always brings attention to me xD
But that pillow of yours is so cool! If I have two or three separate, they often ship when I move at night so I have to rest after sleeping in the right position for a while to fix it a little. I want one
They’re really quite cheap and definitely worth it as they take the pressure off when sitting against them too. I can’t sit comfortably either when I was working ( no longer able to) I was always fidgeting and even at work I often sat with one leg bent under my numb to take some pressure off my lower back, at home I’m always laid on the sofa or half sat up half lieing as that’s most comfortable for me plus me and my partner love a cosy night in front of the tele under a blanket so it works well haha. In the car I find myself sitting side ways with pressure mostly on my hip rather than my back as it’s the lesser of 2 evils when it comes to pain, it’s just a nightmare to get comfy as my knees are also very painful and dislocate does even bending in positions to ease my back can trigger my knees or other parts off so it’s often a case of what pain I can deal with best lol
oh, again the same with bending one leg and as I have more problems than EDS going on with my knees, now the priorities of unburdening knees-vs-back already changed... I miss that xD We always need to choose what to burden to unburden something else, huh? :/
and how you deal with your neck when you sit half laid down? I am unable to sit anywhere with the back leaned more than about 90* cuz that always makes me pull my head forward and keeping my cervical in that position triggers mentioned symptoms (nausea, dizziness etc.). Similar when I lean forward without supporting my head - which is very uncomfortable but the position that I choose the most of the times, especially outside. I know you do not have the cervical part spine problems as developed as I do (lucky you, work on not having that!) but you probably could feel some patterns and feel what position your head is and how the curvature of the cervical spine changes. Could you try to explain how it is with you in that half laid sitting position?
And yeah, I can imagine having human-pillow is a very nice thing, but that I won't be able to buy on amazon xD
That’s where the v pillow comes in I can lay against it and the top part supports my head as I lay into it rather than on it if that makes sense. Haha I don’t know about a human pillow he moves just as much as I do however on the off occasion I do lay with my head on his lap watching tv and fall asleep he never moves I could be asleep for 2 hours and unless he’s breaking his neck for the loo he won’t move me because he knows how much I struggle to sleep lol so he’s a good bloke really even if he comes across as a hardened idiot full of tattoos and a Mohekan hair style lol he’s soft as a cat with me unless we argue in which case we’re both a pair of raving lunatics lol luckily that don’t happen often lol. I think it’s just a case of finding pillows and supports that work and positioning them the best way for you, you can also get full body pillows that kind of wrap around you and you can’t raise your legs on them etc however he drew the line at having one of them in the bed as apparently he had no bed as it is ( I lay right up against him lol it’s a comfort thing) so unless I tell him to sleep in the spare room I ain’t going to own one of them anytime soon lol.... do you use walking aids ? It’s something I’ve been seriously considering lately due to muscle weakness in my legs and my knees giving way and also as a way to take some pressure off my spine. I meant to ask the chiropractor yesterday but I just rambled on about everything else and forgot lol
I will have to get one!
regarding walking aids... I actually wrote about that in another post xD as it is my quite big concern. I know that I will have to in the future, probably sooner than I thought.
The problem is that I am way too proud to let people see that I am in pain and gradually becoming disabled, so using the aid would be absolutely the final option for me. Which I know it may not a smart option but I would feel like I gave in to the pain and acknowledged that I cannot do everything anymore. I always choose to clench my teeth and walk dragging my numb leg, keeping up with nerve shock (I have no idea how you call it in English) going from my lower spine to my legs in every step still non-stop tensing my torso muscles to keep my spine from falling apart xD <- that is how stubborn and self-destructing proud I am. Tho today I went out with orthopaedic corset so there is progress (let's keep the fact that I was covered with my coat the whole time so no one could possibly see that) xD
I am extremely introverted with my pain and everything that is going out with me, to the point that not a single person knows about what I have and the scale of my pain. Everyone around me is taking it as a hypochondria as I do not look like I was in pain (however pain looks like in their minds) cuz I prefer to fight for a functional body as it is my tool, so, for example, I am stronger had a possibility to compare to xD but yeah, I can uplift heavy objects, so what if I have a problem with holding my spine while simplest walking or keeping my wrists from subluxating holding a pan xD that is not possible according to people.
The other thing would be the fact that I need my hands more than my legs... and crutches, for example, would be too much for both my elbows and wrists (at least my shoulders should be good enough for the moment... I think) and I already have a bit too much trouble with keeping them non-stiff and paresthesia-reduced xD In my profession I somehow could manage without legs, but there is no way to do the work without working hands (and - both of them). At least that is my opinion and I might be wrong but that is my logical reasoning
I sometimes use light support for my wrists when I am working manually, but they "do not like to be tamed" xD , not for a longer time. There are fewer episodes with them, but after taking off the support they hurt in a very weird way that I cannot explain lol
I also started to think seriously that I have to do something wrong cuz the tempo in which I 'fall apart' and my pain is increasing is way to fast to be "normal" even with my problems. And I have absolutely no one to compare to.
How would you sum up the progress of your pain and the restriction going with it? I would be EXTREMELY grateful for any info, especially seeing how similar our spine troubles are
It is a weird feeling that the first person that I started a conversation here has such a similar problem to mine tho It would be better if no one nowhere would have it AT ALL xD
To be honest, I was planning on not sharing too much as I am used to doing, but I kinda started to feel better by telling all that even to someone who is not connected to my life
no prob, I had to take quite a while with that reply and I did not think myself I would be able to even start it yesterday, a am amazed at myself xD
I still try to have a normal life, I took a break from my work - over a month now just to take care of myself (hail the freelance work!), but it is only worse as it was progressing faster and faster by each month. So I am in a tight spot and I have no idea what to do to try to live as I want... Each try ends up somehow as a fiasco :/
What meds are you taking? And what are the others that you tried? How do they for you? If you don't mind me asking.
Take as much time as you need!
I totally get what you mean and I’m sure no one understands my level of pain either not even my partner although he is understand but I don’t think anyone with out experiencing it can comprehend the level of pain we suffer.
I have thought the same about walking aids however with the deterioration of the muscles in my legs and the pain and subluxation of my knees is becoming a more repetitive thought for me and one which I will voice to my gp or chiro at one point when I feel the need too.
My pain started bad but I was 14 so what was bad to me then as a child probably would hit a 2 on the scale now as an adult. Over the years I have had mainly flare ups that come and go a few times a year with the constant pain being relitivy minimal and manageable bar any subluxations or dislocations and the fibro however the last 2 years things have been getting progressively worse and the last year has been the worst. There isn’t really such a thing as a flare up for me now my pains either really really bad or bad but managed with meds to a degree where I can function and the really really bad episodes are lasting longer and becoming more frequent to multiple times a month rather than a few times a year.
I also feel my body is different my legs are so so weak that they shake walking up or down stairs or squatting to sit or standing for any length of time along with my back and the pain is all over which could also be a fibro thing too.
I guess we just need to listen to our bodies and force people to listen to us as along with the pain mental health is a real concern and I know that has been worse for me lately because I have no real break from being in pain, I can hardly go out ( once a week if I’m well enough) my income is almost none existent at times because I work from home because working a normal 9-5 was impossible but even working from home is impossible during the major episodes as I can’t sit up long enough to work it’s a vicious circle really and well fighting for disability is a joke in this country I’m still waiting for my court appeal which has been on going for almost a year from application it’s just degrading.
It’s good that we have similar issues and can bounce ideas and thoughts off each other
to be honest, even the people with pain often (in my case never) understand the other side, as each sentence is turned to be about them.. :/ And I get it, pain is as intimate thing as possible. You cannot share it in any other way than words. And for every single one, pain is as hard as they feel it, it cannot be compared and trying to do so do not help anyone xD Telling about it brings ease to a lot of people and I envy those who can continue to speak about it after the feedback "and I I I...(just stop talking, now every turn is my turn to speak" or "there is worse pain than that, you should not complain" (the nr 1 version for people without any chronic pain). But the worst for me is not beliving... Like, sorry but I am NOT gonna stop fighting every day with my body and mind just so they (including doctors) could see and say "oh, I see, poor you"... In the beginning, loong time ago I seriously believed that I was hypochondriac... I am not making that mistake ever again.
My pain started with knees, as I also have a knees dysplasia and in the beginning, I listen to doctors and lessen the pressure and sports activities and then episodes of subluxation hit the point of even daily. The 3/4 days trip to the mountains hiking (I know, knees vs hiking... but I was mentally desperate for exercise) and that was the first time I started doubting doctors. Even tho it was painful as hell, after coming back I realised, that until the build-up strength of the muscles subdued, the subluxation lessen tremendously, and after a week or so, it was back as it was before the trip. Till this day I exercise my thighs daily, no matter if I am bedridden with terrible flu or worse day because of paraesthesia in them and barely can even stand on them. That is my bible - keep the muscles strong (as you probably already concluded after a few of my posts) xD Knowing that my muscles can do the task I want them to do, helps overcome the pain (if it is not subluxation or tendons tearing lol
) and do it even if they shaking because of paraesthesia weakening... yeah I'm self-destructing masochist haha
I have the same thought - I would be the happiest and the least complaining person on the earth if I had my pain from when I started "panicking" and thinking "this is really bad". And I am telling myself this every year: "Oh, what a sweet time that previous year" ... even tho I was on the verge back then. Our endurance evolves along with our pain
14 is not a good age for that kind of pain :/ I hope you had at least enough amount of support from your family or someone to guide you through it.
About what kind of walking aids are you thinking about?
And... do you have ANY clue how to tell the EDS pain from fibro pain? xD I even have no idea if that is a stupid question or not. The Idea of fibro pain is with me from like 2 months, even tho it started way back but without diagnosis or even suspicion of it... my lovely bunch of doctors. Of course, I know when I hurt my joints, but... I am lost with everything else now
And again with meds if I may ask. What meds are you taking? And what are the others that you tried? How do they for you?
Cuz in my case I tried a whole bunch that names I don't even remember and they did nothing (for a pain cuz side effects...) or like... 5-10%, often just at the beginning (like tramadol), Now after years of break from painkillers (excluding ibuprofen that I am so blessed that helps perfectly with my headaches). Now I am on pregabalin and... I've never ever had that high amount of mixed feelings at once xD
Regarding the walking aids I think crutches would be my way forward if I chose to as I’m assuming they would give me the best balance and take some strain off but again I’m hoping this is a long way off but it’s still something that’s in the back of my mind a lot. Yes keeping muscles strong is definitely key to avoiding dislocations. I however have hypotonia or hypertonia I forget how the spelling goes and both are different conditions lol mine is muscle weakness so that’s an added pain as trying to build my muscles is a hard task so I’m
Surprised my back muscles are so tight ( at least I know some of them work I guess haha ).
I don’t know if I can tell the difference between Eds and fibro pain I kinda assume the difference based on where the pain is. For instance if it’s my back , knees, ankles or shoulders I kinda know it’s my Eds but if it’s my arms, the rest of my legs or anywhere else that isn’t a usual Eds spot I put it down to fibro and during a fibro flare up even the slightest touch anywhere hurts so that is when I know I’m in a full flare up rather than the everyday pain if that makes sense. I could be wrong but that’s how iv differentiated between the two over the years because at the end of the day pain is pain and knowing your body can help determine what’s causing it.
If I told you what medications iv tried I would be writing all day lol however what I am taking now is :
Zamadol ( slow release tramadol)
Methocarbonal ( muscle relaxants)
CBD muscle balm ( not doctor prescribed)
Vanlaxafine ( antidepressant)
Salofalk ( for ulcerative colitis)
It’s a pretty long old list to still be in significant pain afterwards lol but during every day pain they certainly help however during flare ups whilst it might take the edge of I’m still in agony and all I keep being told is that they don’t want to put me on anything stronger yet because of my age as eventually I’ll become immune to the stronger drugs and as I age I’ll have nothing to help with the pain which I do understand and as I say the concoction works for everyday pain. I just hope one day I can reduce that list even if just a little
Also I’m lucky as I haven’t experience many side affects I did put on weight when I was on gabapentin and I was changed to pregablin and now I’m religiously checking my weight almost every day because I lost 3 and a half stone after coming off many of my meds a few years back when my pain seemed to give me a bit of a break for a few months but I did then put it all back on and I’m in the process of loosing it again so far almost a stone and a half. I’m still classed as over weight and I was to loose the other 2 stone again to take some pressure off my joints but I’m certainly not very big now anyway.
The only other symptom I get I a dry mouth I am constantly drinking water or juices which isn’t a bad thing lol.
My nighttime meds and the methocarbonal make me drowsy but again not a bad thing.
The only thing I struggle with is waking in the morning as the amytriptaline seems to make me so groggy and I can wake up at 7 as usual but my eyes are heavy and it’s a fight to stay awake and sometimes the tablets win and I fall back to sleep time 11 which I haven’t done since I was a naughty teenager refusing to go to school 😂☺️☺️
On practically every drug of this kind, one of the side effects was not being able to eat for most of the time. I have to feel the time that I could swallow something and look for a specific thing that when I look at it - I know I could swallow xD and after eating I am even more dizzy :/ But my metabo does not let me lose weight like that. I always needed to do a lot of cardio to lose anything... good luck with that now. With that and the fact that I gradually stopped doing every one of the many sports and depression as a teen, I gained and gained slowly but surely and ended up overweight till I reached my 'change' and made my way out of the depression for good (years of effort). And till now I am not able to lose it as I want to even be on a healthy diet for over a year I think). I lost like 3 or 4 kg in this time...
The problem with weight is that I can clearly feel the impact on my joints when I walk carrying even 5 kg bag. So losing every kg would make a difference.
And same again with dry mouth... Even without drugs, for some reason, I have to drink a lot of water (without having this dry mouth). Since I remember, even before chronic pain started. And I mean for years back I do not remember a SINGLE DAY that I drank less than 3 litres. When I do not drink enough I get sleepy A LOT, yawing non-stop and losing all strength. And I was back to 'normal' after drinking enough of water. I have no idea if it is just psychological or some clue in what is wrong with me :/
And drinking too much is not a good thing, especially long term. But I can't help it
My latest 'trick' to wake up are caffeine soluble tablets. I am not able to even take my meds without it for the recent 2 months. Previously drinking half of lithe of water or cold tea (as I like to drink cold as a substitute for boring water or sugary juices xD ) and waiting 15-30 min to take effect was enough to be able to get up. Without it my head is spinning unbearable and my legs are weak (I see you call it groggy, in polish we call it having legs made of cotton wool haha)
I have caffeine in both soluble form and regular pills, but they work much slower and cannot wake me up in the morning. When I am working I drink energy drinks... a lot. I know, I know they are bad, but caffeine is not enough to keep my mind focused. Now I am on a break cuz of my flare up and I do not think I would be able to work even on energy drinks. (note the info above about the healthy diet lol)
geez I never ever used "I" as much as when I am talking with you xD I feel like those people that I talked about, just turn everything to "I"
So sorry for that, but it is a quite nice change to actually say anything about it (and I ended up saying A LOT xD ) to someone who does not take you for some fake attention-taker (I hope lol)
wow... that is hella a long list girl
In my case it always was like: "well I don't believe it, but you want a pain killer - here you have a few different, do whatever you want with them". Or "just in case you have something anti-inflammatory - take it whenever you want..or not...whatever". Doctors <3
And as nothing worked, I listened and then stop taking anything.
I want to be able to differentiate that two cuz with fibro it pains but moving against it is not that dangerous as when it cames from EDS... I don't know, all pain just mix and overlap... or whatever it does. I will try to focus on that.
I also decided to put much more pressure to my doctor so that he would prescribe me MRI of the spine (even just lower part) and knee. Knowing the current damage would help me connect it with the sensation and pain and hopefully set a path to a new lifestyle.
The problem is... as I mentioned, my doctors do not take it seriously and "as nothing can be done about that, we have to put our money into someone who needs it more..." (that is the thing with public medical founding). And it costs far too much to do it on private founding as I am all by myself. But the waiting time when doing it in public founding is another problem (usually from 200 days to a year or more unless you will call every medical centre in every city in the whole country xD).
Again to the walking aid... I get goosebumps if I think about it xD
Well, lighter version of the crutches which would be the best choice for spine I assume... tho I have my doubts and for sure for long term. There are also (well, my first research of the subject haha) walking sticks, the folding ones even. Which sounds nice if you 'start your journey with walking aids'... I don't know having support putting way basically solely on the wrist (my wrists are subluxating the most often, so that is why I worry about that). And the second thing would be using only one. That would create asymmetry while walking, so It would create new problems probably... I do not see myself AT ALL with two crotches. Maybe just this folding one to support while standing somewhere waiting or walking around in small spaces like shop, office or sth like that... But I would have to explain why I have this... what would I tell them? put all the blame on a single problem and stretch the truth? "I have herniated disk and it affects the legs"...would be simple, short and everyone would understand I guess...
I am totally lost recently with EVERYTHING as I am in my flare up as you name it... I guess I have to read into the subject much deeper to understand it better, I hate reading about the symptoms that I have or might have that are even worse and how it ends up for people... I do not have depression as I learned to deal with it in the past but that is a bit too much. Do you have the same? Or does it bring you some kind of comfort and is somehow a proof that it's not only in your head xD
It is a hard and confusing illness especially trying to differentiate between 2 different illnesses, I guess that just came with time and understanding the new pains and comparing them to the other pains as there’s no real difference in the kind of pain between the two, and in all fairness both conditions usually are treated in the same way pain wise.
Your right that 1 walking aid may make you walk leaning to one side which of course wouldn’t be beneficial at all. I’ll take it up with my chiropractor when I see him in 2 weeks time and see what he recommends as I am getting concerned about my legs as walking down the stairs is a worry because they shake so much! Not that aids will help on the stairs lol I was just using that as an example as to how bad they are.
Yeah quite a list of medication and still in agony it’s 12.30am here and the pain has decided to peak again and I’m just laid here like I don’t know how much more of this I can take almost 2 whole weeks stuck in bed ( I do minor hours work like wash up, vacuume and care for the animals ) but otherwise I’m in bed suffering as I can’t get comfy sitting as it hurts so much however it now hurts laying so it’s a loose loose situation at the moment lol. I’m hoping it’s just the pain before the gain but time will tell. I feel that whatever he has done may well be great for my muscles and a way of getting my back moving properly again however because I have sensitive nerves I think maybe he’s upset a few of those he seems the bad additional pain ;( I don’t know, I’m going to keep going and see how things go and I’m making a pain diary to note everything I experience during a day so that I can use it at appointments and to show the doctors and to remind me of things that need mentioning when I next see people .im just rambling now. I’m going to try and sleep but I doubt very much it’s going to happen anytime soon lol
Also yes I hate reading symptoms but at the same time I did take the time to learn as much about the condition as I could sometimes you have to be your own advocate and point the doctors in the right direction and when you can explain something and reason with them and show proof eventually they’ll will do the right things instead of fobbing you off however there’s only so much they will do so even gaining the knowledge can be short lived for getting you anywhere fast
just to write before reading your comments, sorry (terrible morning)
... I am a bit embarrassed to say it, especially saying all that about being aware of managing your muscle strength and symmetry... anything that you remember. As I mentioned, I just started to take pregabalin (it's my 6th day now). I have such mixed feelings about it. Its effect varies not only after each dose is taken, not only each day but in the time of working the one dose and especially when one wears of. And that is the time that I notice the most difference. To sum up - I do not feel less tired by the definition of feeling tired but I definitely can move around a lot more. Like my body is awake but do not let my mind know that it is haha does that make sense? But still, that is such a deliberating feeling that it makes me love this drug (despite being on the high on it... I do not care, maybe I will be able to turn this 'high' to the actual mind working). And the pain coming from joints and paraesthesia in the form of a sharp pain (either localized and radiating) is stronger. No arguing. And I have less control in my left leg, more trouble to keep it "unnoticed". But my hands are not as numb as they were (but the pain is still the same).
The embarrassing part tho... that would be something that I noticed only yesterday evening/night. Starting from the conclusion - it turned out that for all these years I did not notice that my muscles hurt. So much and so fricking everywhere. That must sound like a joke. I couldn't believe it myself. It's not that they became 'desensitized' (I am not sure how to call it in english) in the sense of feeling them but they relaxed at least partially. My spine is a mess to hold (and that is the reason for enhanced pain) tho I am still able to work my muscles as I did, just from the starting point, not tender, same with legs. My muscles had to be so tense ALL the time for god knows how long, for me to did not notice that they fricking hurt like hell...
I was reluctant to sign more than tiredness mind clouding (or whatever is going on there) to fibro. I am not anymore...
And with all that exhausting symptoms and me overworking myself and all the constant fight with all of this I am lost, but to the point of not noticing something like that? Please tell me I am wrong and I am crazy and that is only a fake feeling cuz of the drug xD
I have the worst morning that I can remember and nothing wants to come to my mind from the outside, tho after a few caffeine tablets, pregabalin and waiting 2 and a half hours for them to work anyhow, I am just able to sprout something from inside of my brain lol. So I wonder if this drug just makes things worse or is it the continuing tempo that is happening from this 2 months... The effect of it varies from 0 to 100 so many times in so different areas that I am totally lost :/
So, for now just to try to "focus" on the last part of your message regarding your medication and pain. The most ridiculous thing about being in pain is not being able to sit/lay/stand in a position, cuz not one of them are comfortable. Moving around in bed, fidgeting non-stop while sitting like you would have threadworm (that is the saying in Poland, I think you say having ants in that situation xD ) and step from side to side or I just rock/swing while standing (again with vocabulary - I don't know what the fitting word would be xD ) which for 'normal' people is exactly opposite of being in pain as they think if something hurt - you do not move and it solves the problem xD
there ain't no rest for the wicked hahaha
the rest later, sorry <3
oh yeah, I forgot to mention that this effect of loosening the muscles or whatever that is happened yesterday only with a combination with tobacco (snuff) that I do not use often, but I am very sensitive to nicotine (why not for any painkillers but stupid nicotine? ) . It relaxes my muscles quite well but temporally tho and as it turned out with the combination with pregabalin - not in terms of pain, just relaxing them a little bit for a short while.
I forgot earlier about that and as I tried just now - the reaction was not that prominent but I can feel a difference in pain not only relaxing in them (every 5% less of the pain is a life-changing situation haha what's up with that?)
P.S. I do not smoke, I get terribly nauseous plus I try to have a healthy lifestyle as I can to function (referring to caffeine energy drinks and snuff lol) xD
I do not know how is the situation in your town, but starting it regularly now with pandemy would put me in a tight spot as it causes almost constant stuffed nose... imagine explaining that to people on the street xD
Pregablin isn’t really a drug that loosens your muscles it is an anti seizure drug that is used for certain chronic pain conditions to stem Lon signals to the brain hense lowering the amount of pain you are in ( or at least it’s meant to). If you are getting a high from it I would talk to your doctors as the dosage maybe to high for you.... pregablin is a drug you need to start at a low dose and very gradually up it until you get the most benefit.
Sitting is a pain hence me using my bed as at least I can move around more than I can on the sofa, don’t get me wrong I still do small amounts of house work but whilst the pain is so high I relax in bed rather than on the sofa but it’s getting rather boring and tedious now so I’d very much like it if the pain could bugger off enough for me to get back on the sofa in some sort of comfort lol. The drugs can also cause some confusion and fibro causes brain fog so that could explain why you feel the way you do. Do you want to message me instead of write on here as it’s getting long and constantly at the top of the page meaning other people’s
Posts may be missed lol
that is why later I mentioned that this effect is only by combining it with a snuff that I am very sensitive for muscle relaxing, but snuff alone did not work for the pain in them
I started on 75mg 3 times a day... could it be too much? It doesn't seem like it as the max is
hah yeah, I did not pay attention to that fact, message would probably be better xD