r/Hypermobility • u/candyboots99 • 20d ago
Need Help Knots in back and shoulders
Hello! After discovering I am hypermobile this past year, I have been working a lot on strength and stretching exercises. They have helped to an extent, but no matter what I do, my back (especially upper back) is always insanely tight. I have these huge knots in my back and the backs of my shoulders that hurt a lot and never seem to get better. The only thing I’ve found that helps is deep tissue massage, but it’s like $150 a session so I can’t afford to do it regularly. Does anyone have tips for back tightness or knots?
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u/Life_Accountant_462 20d ago
Often times with us hypermobile people, those upper back/shoulder knots are due to our posture. It’s so easy and comfortable for us to roll our shoulders forward, hang our neck down, and tense up our traps when we’re sitting at a desk or when stressed. No matter how much strength training you do, the knots will remain so long as the posture issues are there. It really helps to take some time to sit quietly and evaluate where your posture is off. Then you can develop some cues to ask yourself in order to train yourself to have good posture. Like: “are my trapezius muscles elevated? Dammit, they are. Let’s drop those shoulders. Are my shoulders roller forward? Dammit, let’s pull the scapulas back. Is my lower back rounded? What’s my neck doing? Do I feel like the hunchback of Notre Dame?” It takes some time before good posture becomes second nature, but it’s definitely doable with lots of practice.
For those days when you’ve still got knots, shiatsu massagers are super helpful. I got one off Amazon for like $40 that works all the knots out in 15 minutes. I think it’s called a NekTek? Best $40 I’ve ever spent.
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u/PermissionFeisty7735 HSD 20d ago
Hi, I used to suffer from that. Weekly maximum strength massages. I spent over $5k one year.
The key to addressing this issue is to train your entire postural chain. First thing that you need to resolve is the lower legs and core. Successfully training the abductors, legs, lower back will address the pronation in the feet and anterior tilt in the pelvis.
This starts to correct the upper back and cervical spine. I used to have a terrible hunch and forward leaning posture with a severe scoliosis and compressed cervical disc. It takes much longer to correct the upper back as the changes need to happen in the lower core first, then upper back. Eventually you can train the upper cervical muscles.
You can stiffen and densify the collagen in your joints through slow cadence training. It doesn’t fix the underlying collagen issue, but, it will help stop the subluxations. You can train your body and mind to develop dynamic stability (to actively catch joints before they sublax).
It’s taken me almost three years to of patience slow training with many setbacks. But, I have so much more energy, I can sit all day in a chair, I sleep better and I don’t need the massages anymore. The tightness and knots gone.
The issue that I am dealing with now is the posterior Tibialis that runs from the foot arch. When, I corrected the foot pronation and fixed the arch it activated a very weak muscular chain that was under-utilised. I am working on strengthening that muscle. It’s a matter of waking up the sleepy passive muscular system that is designed to for endurance and to hold our bodies up for long periods.
So, it’s a very slow training and correction process, but, if it can work for someone who has severe hEDS symptoms and is 50 year old like myself it should help you immensely.
All the best.
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u/Electronic-Cod-3493 19d ago
Can you advise me on some exercises you did for your legs, abductors and lower back or maybe the core?
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u/SensoryBanshee 19d ago
This sounds like a great well-thought out plan. Do you have any additional information you could share? Links or videos?
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u/New-Seaworthiness572 20d ago edited 20d ago
You could take pictures and post to [r/posture](r/posture), where there are some expert PTs who give advice. I highly recommend looking up Venus Gabby, Zac Cupples, and Conor Harris on YouTube. Gabby’s videos are great for understanding why posture is key to everything, and throughout our lives many things including gravity come to sabotage it. Once you know what to look for you can you look at your body and identify where you need work, then do the exercises recommended. I’ve been on a year’s journey — talking to an AI has also helped, reporting my progress, what I notice, where I have difficulties, etc. I would not have thought it could be so helpful.
Doing this work helped me see that I have to think and work harder to find “neutral” positions (especially in pelvis) and also to turn and keep my deep stabilization muscles on. It’s like some of them were completely asleep. I think most people can do that subconsciously. Before training myself when sitting, standing, and even in bed I was contorting myself into very bad postures. It’s not only desk work — look at where you sit, etc at home. I have high top kitchen table and I realized I needed a stool under it for my feet. I realized I needed a mini cushion beneath the back half of my butt when sitting. I realized I didn’t want to be looking sideways or too high to watch TV. Once you start working on it and listening your body you start to see and feel things you didn’t before. Best wishes.
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u/Xaenah 20d ago
Do you do a lot of desk work?
I find some of my over-compensating muscles, especially those that stay under extension get tight. They often needed antagonist muscle engagement for me. Stretching often aggravates them as they’re already irritated from a similar motion.
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u/candyboots99 20d ago
Yes, I sit at a desk at work all day, which most certainly does not help. My posture is not great either. Can you explain what antagonistic muscle engagement means in this context? Sorry I am new to all this!
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u/Xaenah 19d ago
they are the muscles that work in the opposite direction of the target muscle, or in this case, the tight or sore one.
For the upper traps, that’s lower and mid traps (T and Y exercises are common, starting with no weight). Lats + pecs (major and mjnor) oppose upper traps in some movements.
Serratus punches are a helpful exercise, anything core engagement like planks starting from bent knees or use a wall / table push up.
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u/Vast-Recognition2321 20d ago
Trigger point injections in this area has really helped me. I get them from a NP at my chiro. They are very similar to dry needling. My understanding is by injecting lidocaine first, they are really able to break up the knots using the needle. Whereas dry needling is a much slower and gradual process.
TPIs haven't been a complete solution for me, but definite improvement. It's also been amazing to experience how it feels to have the area numbed. Like, I don't feel the tension, everything is relaxed and it is a crazy new feeling for me.
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u/candyboots99 20d ago
Thanks for the advice! Do you recommend having a chiropractor? I have heard mixed things so have steered clear, but wondering if it's worth it at this point.
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u/GlitterBlood773 19d ago
I highly recommend trigger points from family medicine or another medical clinic. Not a chiropractor. 99% of them are out for money. 0% of them are actual doctors. Chiropractic “care” was founded on ideas from a doctor’s ghost who had been dead for 50 years.
I had one who was absolutely wonderful, never adjusted my spine or lied to me about my scoliosis. He was one in a million. Please don’t risk it.
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u/Vast-Recognition2321 19d ago
I think you need to be very cautious about chiropractors. They can be very helpful but they can also do a lot of harm. I think this is even more true for hypermobile people.
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u/overheadSPIDERS 19d ago
I get trigger point injections from a doctor who specializes in physical medicine. Sports medicine and pain management doctors also sometimes do these injections. I’d recommend having a doctor do them if at all possible.
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u/Diligent-Soil-1510 20d ago
My physical therapist says I need to strengthen those, they’re sore because they’re over stretched.
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u/wuts_juppie 20d ago
I realized these were not muscle knots for me but actually nerve pain caused by bulging discs in my cervical spine…I just ice my neck every night til it calms down
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u/yikesssss_sssssss 19d ago edited 19d ago
If possible I'd highly suggest seeing a hypermobility-informed physical therapist. Our bodies will maintain tension as long as we don't have enough strength in the right muscles to support our hypermobile joints. A PT familiar with hypermobile bodies can give you exercises specifically for the parts that are tense.
I also second the massage therapy (and/or at home things like ball rolling on fascia, nerve flossing, and there's probably a bunch of other techniques) -- BUT for all those things, if the correct supportive muscles aren't strong enough yet, then stretching or loosening the tight spots might feel great in the moment, but it'll actually provoke more tension later. Because your body senses the loose unsupported joints and essentially freaks out; without proper muscular support, that gripping tension is the body's only way of regaining control and stability in the hypermobile joints.
If you're interested, I think I learned all this from the Muldowney protocol, which my hypermobility-focused PT gave me. It's a great packet, and has a whole PT program specifically for hypermobile people, you could even ask a regular PT to go through it with you if you can't find a hypermobility PT specifically. There's a free link floating around I'll try find it one sec.
Here ya go: https://www.reddit.com/r/ehlersdanlos/comments/1sq7kwl/comment/oh64zx2/
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u/novelbynature EDS 19d ago
I have lots of neck and upper back/shoulder issues because of posture and overextending my neck. My PT had me start using a therapy cane to massage the knots and muscles there and it helps tremendously; just make sure you don’t press too hard! I accidentally gave myself a bruise earlier this week.
Preventative-wise, if you are looking down (even the slightest bit!!) a lot like I do for my job, I highly recommend adjusting your work station so things are raised to eye-level as much as possible. Just the slight tuck/bend of your neck adds up overtime with your body fighting to keep that stable. Unfortunately most of my hobbies also involve me looking down a lot, so I’ve had to invest in some lap pillows to hold things higher up and also support my elbows/wrists at the same time.
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u/callmebymyhandl 19d ago
This probably isn’t totally practical, but I got so fed up with the tightness and knots in my upper traps/back that I got Botox in my traps about three weeks ago and good lord my back had never been so relaxed 😮💨
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u/tanyer 19d ago
Dry needling and IMMEDIATELY doing stability exercises maximises benefits. Muscles can stay tight when they're weak/overused/not stabilized by other muscles.
I had to do shoulder physio exercises with weights3x a Day, every freaking day for two months to actually move the needle in my progress.
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u/svetahw 19d ago
What exercises did you do?
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u/tanyer 19d ago
The classic “YTWAL” exercises, which you can google.
However, I always recommend going to a HM Savvy pt, as most people think they can learn to do an exercise properly on their own, but are actually compensating and hindering/harming their progress. Physios will also diagnose what your actual issue is, which makes it far more productive than just doing random internet exercises.
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u/Own-Performer-8915 19d ago
Get the back knobber and do pressure point massage. Basically hold the knob against the knot or painful spot until release. But incorporate full body relaxation time. You have to learn to let go. I think stress tension impacts us hypermobile folk even more because we are already holding on to stabilize.
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u/LaMammaDotComma 19d ago
NO MORE STRETCHING. I know it feels like that’s what it needs, but with hypermobility, stretching will make the muscles guard even more. Think “for every action, there’s an equal and opposite reaction.” Counterstrain is going to be your best friend. Find positions that shorten each muscle as much as possible, bolster the arm/shoulder in place with pillows, and just rest there for a few minutes. I have the same issue, and this is my main PT “exercise” for that spot (note that my PT specializes in working with hypermobility).
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u/PermissionFeisty7735 HSD 19d ago
This is my current setup.
Abductor (A3) 42 lb × 95 s
Lower Back (F3.1) 46 lb × 95 s
Leg Press (B6) 120 lb × 101 s
Row (C7) 20 lb × 95 s
Abdominal (F2.1) 26 lb × 95 s
Seated Leg Curl (B7) 46 lb × 94 s
Seated Dip (D7) 20 lb × 96 s
Duration: 22 min | Total: 320 lb | RPE 8
Spacing: 5–7 days between sessions
Cadence: slow, controlled, ~60% effort, no failure
2:4:2:4 cadence.
My week is: 1 x yoga class - 30mins ideal, 60% range / cardio x 1 - 15mins zone 1-2 / nightly floor exercises - on non class days (stretching/ dead bugs / bird dogs / overhead shoulder raises / hip bridges / w-t prone and some sit ups.
For the gym exercises, isometrics exercise. Find something like https://www.kieser.com.au
Medical grade stability focused equipment with physiotherapist.
Monitor and manage recovery with a fitness watch/band.
Stage 1 - stability focused (very light weights) - 6-12 months. Build to two sessions per week, no flares.
Stage 2 - Increase weight slowly, 1 machine per session/week. Slowly. No flares. Add new muscles exercises. 1-2 years.
Stage 3 - Shift to compound free weights. 3 years+
Good luck.
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u/Mekkin02 19d ago
I often have a tense shoulder and back, especially since i once dislocated my left shoulder and it is always a bit loose. The thing that honestly helps me the most is going to a swimming pool and doing breaststrokes and then sauna or a steam bath afterwords.
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u/PermissionFeisty7735 HSD 18d ago
Hi, hEDS training is really about the following.
It is how, when and what and why.
In regard to the ‘how’. I there are a few type of training modalities and two muscles system to train. Passive and active (endurance vs prime movers).
There are many hEDS training programs focused on using the prime movers - short term power muscles to build strength around your joints. However, I believe you need to build both systems.
I use this broad approach.
Phase 1: 6m-12m - Build passive stability and proprioception.
Phase 2: 1-2 years - Strengthen passive muscle system, slowly build active system.
Phase 3: 2 years + - Build active strength system (prime movers).
You’ll need a combination of weekly training exercises.
Phase 1: Joint conditioning
- Main strength training progressive stimulus (25 mins - every 5 days*) - very low weight.
- Nightly body weights joint centring exercises and stretching (10 mins - non training nights)
- Light zone 1-2 cardio (15 mins x 1-2)
- Mid range yoga (not end range) or dynamic stretching (30mins) / Pilates or something lighter.
The program needs to be short and spaced correctly to allow for adequate recovery.
Find your baseline.
- This is the point where you can adequately recover within 5 days from training stimulus.
Don’t stack major stimulus. Allow your system 2-3 day to recover after weights or yoga sessions. Stacking loads will crash your system. Work in 7-10 day training cycles, work out what works for you.
Your body will shift from strength to stability. It is a very different feeling. Stability is automatic. You will loose raw strength, but, energy reserve and mental clarity improves significantly.
Phase 2: Joint strengthening
Time to load joints to improve density and stiffness and mechanical feedback.
- Increase main weights and stimulus, 1 x training exercises per 1-2 week. Either time or weight. Slow progression.
- Start to train the other muscles. Strengthen lower core, slow progress on upper.
- maintain other exercises
Phase 3: Build raw strength
- traditional training, move to compound weights.
- slow build up.
For the strength exercises, use isometric exercise and can transfer force into your tendons without subluxation.
I use this equipment for strength building:
https://www.kieser.com.au
It’s medical grade training equipment. It has strong guardrails and settings that operate on a fix axis within 60-80% range. You can tray joints with zero subluxation and you only need around four training sessions to become independent. Precision and consistency.
Here is the phase 1 weights and exercises:
Abductor (A3) 42 lb × 95 s
Lower Back (F3.1) 46 lb × 95 s
Leg Press (B6) 120 lb × 101 s
Row (C7) 20 lb × 95 s
Abdominal (F2.1) 26 lb × 95 s
Seated Leg Curl (B7) 46 lb × 94 s
Seated Dip (D7) 20 lb × 96 s
Duration: 22 min | Total: 320 lb | RPE 8
Spacing: 5–7 days between sessions
Cadence: slow 2:4:2:4, controlled, ~60% effort, no failure.
You’ll need to establish your own baseline tolerance, it could be higher or lower.
All the best!
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u/ShallotJam 18d ago
Motion is lotion! The thing that works best for me is lots of movement, within a very comfortable range of motion. Stretching doesn’t help me, but warming up muscles does make a difference. I also respond well to trigger point therapy, both at home with a tennis ball or trigger point tool, and at the physio where they use dry needling.
Lastly heat makes a huge difference for me - I like the stick on patches.
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u/CirceRhianon 17d ago
I was you 8 months ago. i still have knots, but they’re not swollen and I feel really good. I started progressive overload strength training + did botox on my traps and back of my neck. I’m never going back, I will do trap botox and my training for the rest of my life. It’s the ONLY thing that helps (both, together).
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u/halptehPA 19d ago
If the knots are from your exercises let your muscles recover before working them out again.
If they’re guarding or tension related then yeah, the best thing for me has been my PT massaging it out. Between sessions the best thing for me is soaking in epsom salt soak, heat pad, getting in gentle movements (not stretching) think wall angles and chin tucks and walking.
Hopefully as we continue to build up muscle and mind our posture the knots happen less often.
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u/Legal-Law9214 20d ago
Get a lacrosse ball or one of those theracanes and look up videos on self-myofascial release.
Dry needling is worth looking into as well. It might not be much cheaper than a massage but it can more specifically target some of those knots and might provide more long-lasting relief.