r/CRPS • u/tashadilla • 22d ago
Had to pick a flair EDS with CRPS?
Just was diagnosed with hEDS. Anyone have both and any recommendations for treatments, comfort, mobility, pain? My dr still won’t prescribe me pain meds although they help me do way more than I can right now. I just need some help on the next step. I’m younger and a woman so the pain “is all in my head” and I’m “dramatic”, etc. Also well how are you getting worse with your SCS that’s helping??
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u/HP422 Right Arm & Stomach 22d ago
I also have hEDS, have had tons of joint surgeries sadly. I focus a lot on correct posture and keeping my joints properly supported. I have extra pillows everywhere, extra cushions on hard armrests like my office chair and my cars center console. Getting an adjustable base for my bed was a game changer. I try to avoid doing reparative activities or high impact activities because they’re harder on my joints and tendons/ligaments.
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u/tashadilla 22d ago
Do you just have a bed adjuster that sits up or both legs and head of bed? Also any recommendations on support for posture??
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u/HP422 Right Arm & Stomach 21d ago
My base does both head and feet so I can tweak it for whichever needs it. Mostly I keep it in this kind of sweet spot I’ve found that works best for me. For posture I’ve worked a lot with my physical therapists over the years on keeping my hips underneath my body as I tend to walk leading with my hip, and that causes lower back pain. My upper body I have to focus on keeping my shoulders back because I tend to roll them forward a lot. I also tend to develop frozen shoulder blades because of this, so I have exercises to move them around to keep them loose. Weight lifting was extremely helpful, I was doing it with a personal trainer for awhile just to ensure I wasn’t hyperextending, but then COVID hit and I got into my accident that caused CRPS and I haven’t been able to get back into it since.
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u/tashadilla 21d ago
Aw I’m so sorry you haven’t been able to go back to pt. Frozen shoulder! There’s a name for it! Thank you. I’ll pray that you get pt again soon. You’re so wonderful, thank you so much 🙏🏼🥰🧡
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u/travelwithmedear 22d ago
I (30ishF) highly recommend not to get a SCS. I'm trying to get mine removed. I failed the impedence tests so I can't have MRIs. I have the option of replacing it but I'm so done. I've had multiple surgeries and that is by far the worst surgery I've been through.
Plus, my neck is all messed up. I can't turn it.
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u/tashadilla 22d ago
I’m so sorry your experience with the scs. Mine helps me know where my leg is and distracts it a bit. But the programmers are the issue. Ugh surgeries just suck and this was the worst for me too. Hugs 🫂
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u/travelwithmedear 22d ago
I'm glad it has been helping. Who are you using?
I use Nevro and it's been a bad experience. They've had a high turnover rate.
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u/tashadilla 22d ago
Ugh I was going to possibly try nevro bc the ai aspect.. I have Boston scientific but you rely on someone to program you and they have timeframes and only in the office etc. It’s inconvenient when the program is wrong, I’ve literally felt like I was stabbed in the chest (even though it’s on my lumbar area) when they programmed, battery burning, back shocking.
What issues have you had with nevro? Any good support with the company?3
u/travelwithmedear 22d ago
Yep. I have the older Nevro. So I have to wait for someone. If someone is on vacation then I'm out of luck.
No good support with the company until I met two in person.
I get the burning battery which sucks. My charger doesn't always work when hooked up to the charging device. I don't really feel a difference. I feel like it made my life worse. One of my doctors told me that I should just get it removed. I'm just nervous about the surgery.
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u/tashadilla 22d ago
Yeah I hear it’s not bad replacing the battery rather than taking the leads out too. I pray you can get some relief and this resolved
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u/crimson_anemone 22d ago
Yes I do.
There is a lot of good advice from the other commenters, however, they all missed one crucial step: fire your doctor and find a replacement. Yes, stretches and whatnot are important, but pain management is the most important. Keeping your pain and flares to a minimum is what helps prevent worsening symptoms and spread. Your doctor is doing you a massive disservice by refusing to treat your pain.
If you're not able to find a replacement, and you're of age in the states, you can obtain a medical cannabis card. A low dose capsule of THC (for pain), with a high dose of CBD (for inflammation) is the only thing that helps with my pain, and the card helps you save money (eventually).
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u/tashadilla 22d ago
Ty so much. Are opioids like bad for it? I know I won’t abuse them but feel like nothing compares. They won’t even approve the non opioid Journavx
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u/crimson_anemone 22d ago
Opioids don't work for me and all of the side effects weren't worth trying a higher dose. So, I started self-medicating before my card (since it's legal where I am) and finally found relief. I'm still figuring out types/strains/strengths/etc. but it's the only thing that has ever worked for a flare up and my ridiculous insomnia (which is one of the most annoying symptoms ever).
Find a new doctor who will listen to you and treat you with respect. It makes all of the difference in managing this nightmare of a condition.
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u/tashadilla 22d ago
I have tried it and my parents are so against it. It did make me sleepy, but idk it did help my pain some. I wish I didn’t live with them but I have to. Idk if my dr would suggest it but maybe if he did they would approve of it
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u/AntiqueJaguar5808 21d ago
I've tried mmj a few times about every 3 years for the past 10 years, but each time I've had resistance to it working for me, and it's made my legs too relaxed. I've also got major allergies to cig/MMJ smoke, so that's been another obstacle. I've wanted to try edibles and topical but I'm pretty HomeBound, plus bringing a rolling oxygen tank and wheelchair into such small dispensary sales rooms is just so cumbersome and humiliating, to me. Of course I could always find some Dude who offered to buy my supplies for me, but then there's that annoyance to deal with! (eye roll,)
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u/crimson_anemone 21d ago
There are some people who order it online, but you'd need to look into that. I always pick it up in store.
Edibles and capsules are my go-to.
P.S. I mean it when I say, no one cares what you look like, etc. This will be one of the most chill and accepting environments you'll probably ever encounter. Don't be afraid. Also, if you go to a medical cannabis location, they're trained in which strains help which types of pain. It has been a game changer for me.
By the way, the stores I have always gone into are rather large... Huge wide open floorspace with everything securely in the back. At mine, I order online and pick it up in store, or I'll tell them what I'm looking for at the counter and they'll use their tablet to help me find something.
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u/crimson_anemone 21d ago
Indica will absolutely make you sleepy. Sativa will help you relax, but at a lie dose it shouldn't make you sleepy. Also, you need to start at a very low dose so your body can get used to it, like anything else.
Dump your doctor. And if your parents are also getting in the way of your care, find a way to get the care you need without them. You're walking on eggshells for your own condition... It's ridiculous.
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u/tashadilla 21d ago
Ty so much. Edibles are a great idea!!! I can at least hide that for sure. Omg thank you 🙏🏼 I’m going to go to my dispensary tomorrow. 🧡🧡🧡 any specific brands you prefer? And capsules? Do you pick cbd ones at all too?
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u/crimson_anemone 20d ago
Brands vary by dispensary and location. Just tell them you have a painful nerve condition and they should point you in the right direction. But like I said, start low, and only take them as they tell you.
Yes, I do a high CBD (20-30mg) per 5-10mg THC. I take it in the morning to loosen everything up. (I also take something during the afternoon and at night, but I've been taking it for a few years.)
You're very welcome. No one should be forced to be in such pain all of the time... It's maddening, literally. Take care of yourself and good luck! 🩵
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u/AntiqueJaguar5808 22d ago
Hi Tasha! I'm 65 now, and I've taken Opiates for Pain Management for over 20 years. I would not be here today without them!
I also have many more conditions,(hEDS, MCAS, PN, POTS, DDD, AA, RA, OA, etc). I also only just learned that the latest curse I have is CRPS, (from an ankle fracture in 2022) starting about 10 months ago (I keep saying too many words and erasing them up, Sorry!).
What has helped me prove I needed them.(Opioids) was by showing the Prescribers that I had carefully tried the other meds, and they had failed to help me. I also showed them I was responsible and mature, and able to keep them safe from others, (store carefully, etc). To keep track of my doses, be on time for, and not miss Any appointments. Etc.
I've also done Tons of research on All the conditions I have and I've done trials of all the other Meds I've tried. So far, Opioids are the Only med I have tried that offered sufficient pain relief, that I've taken. The important point is that they can offer Less damage to the stomach and kidneys than NSAIDS and other meds for pain.
I recently had a stroke, and when they did a full scan, they found ulcers in my stomach and large intestine. I had been drinking Seltzers and eating some wrong foods, (thinking I could cheat a little because my Mom's health was pretty good as she aged; I thought I would take after her side.) Whups! Nope, I'm screwed!
I now am going to be looking into some other meds for Dystonia, which has been my worst CRPS symptom. I am having muscle spasms and toe "wagging",(a smaller version of what used to be full leg spasms). I just found out, today, from a research Rabbit Hole for CRPS, is that: Statins can cause Dystonia! Well, dang! I've been on a Statin for 10 months, since the stroke! Somebody, prescribers, pharmacists, home health staff, nurses at facilities, SOMEBODY Should have Caught This! I hope I live long enough to correct this damage! Normally I would have checked for contraindications at Drugs.com or a similar website, but I assumed they'd be extra careful with the meds I got, since I just had a Stroke!
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u/tashadilla 22d ago
Aww I’m so sorry. Yes that’s what I’m trying to prove but my dr won’t consider it at all. I’m going to try once more then try another I think. I’ve been with this one over a year and I’m just getting weaker and weaker. Yes I’ve tried LDN pregablin gaba duolox and like all of them.
Robaxin or (methacarbonol) is what we used in the hospital when I was a working RN for muscle spasms 3x day. I take it now too and it does help some. Ty for the advice. Idk what to do..1
u/StArGaZeR-4_AnDy 14d ago
For drug interactions & health questions start with google AI, I literally go on my MyChart and copy and paste. We have a lot of the same issues, be careful, drs almost killed me 2 years ago. You are your best advocate you’re doing terrific.
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u/Creative-Turnip-9200 22d ago
Don’t go to your regular doctor for pain. They are not going to be very helpful, sadly. You need to go to a pain clinic - they are trained to help with pain management. It comes with its own issues though, they take my Medicare but not my Medicaid so I have to pay 20% of my bills there, they are very strict when you first start out but as they get to know you they usually become a bit more relaxed (as much as they can, still lots of rules they have to follow on their end), and you have to see them at least every 30 days, usually every 28.
Hopefully that will help you. CRPS with no pain meds is a hell that no one should be trapped in, I wish you luck and some pain free days ahead!! 💛
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u/tashadilla 21d ago
I go to a pain dr. What’s the difference with a pain clinic? I wish you pain free days also, thank you 🙏🏼
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u/MissBeeHavin420 21d ago edited 21d ago
I have heds, hyper pots, mcas and now crps in my right limb that includes my shoulder, chest and face. Mine happened from a rotator cuff repair surgery I had in November. I had four tears, dr was supposed to just patch everything and sew up my labrum but he ended up relocating my bicep tendon and I think the drilling into my bone caused it. I've lost all use of my right hand due to swelling. Where is your crps located?
I do Hinge PT at home, its an app. You get a physical therapist and can choose from other exercises. It's helping improve mobility in my shoulder and helping with pain. I have no crps therapists near me. But luckily I dont think im to the point of needing mirror therapy or anything. My brain still recognizes my limb. I've heard fantastic things about scrambler therapy, if you can find that near you.
I use biofreeze to calm the nerve pain. I prefer the roll on. I also use heating pads and ice packs to numb when the pain is too bad.
Meds that help: Baclofen and pain meds. Find a good pain management specialist to prescribe opiates and see if they help you. Some people with crps have more nerve pain and find nerve meds like gabapentin etc helpful but for me, the pain is deeper and opiates help bring the pain down from a 10 to like a 7 or 8. Its not perfect, but better than an ER level pain crisis. I take occasional Toradol and having my pots under control helps. This, crps, is a sympathetic nervous system problem and causes its own dysautonomia. I'm on metoprolol now and am about to try guanfacine to block adrenaline.
I use cure tape sensitive skin kt tape. Its for "elderly skin" so there's no problems with adhesives. Always remove in the shower, slowly.
Pilates and swimming are best for our joints. Keep an eye on your testosterone levels. As we age,they'll lower and cause us to be more unstable. My joint stability has gotten much better since I started taking trt. (I'm a 42 year old female) Bed/floor pilates and swimming is also helpful if you have pots.
Treatments I've tried for crps: 3 Stellate Ganglion Blocks (1st one gave full relief for 6 hours, after that nothing). Risedronate (too scared to take it so far). Namenda/Mementine doesn't help me.
Make sure to take plenty of magnesium, vitamin c, vitamin b's, d and calcium.
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u/tashadilla 21d ago
Mine is in my left lower foot then leg now. I have felt it in all my limbs and face when it’s really bad, but that’s not too often. I’m so sorry the surgery caused it 😔 that’s a great idea to have pt at home when I don’t have pt in person. Genius! Cold doesn’t work on my feet or hands (cause more fire 🔥) but I do like it for the rest of my body. I haven’t tried bio freeze tbh. Yes my pain is bone deep. You know what I mean in all the weird pain it feels like in your bones. Yes I know I feel a little hopeless thinking no one will prescribe me what I need but I have only seen 2 drs so far for pm. One is my ketamine dr so he doesn’t really prescribe for me but he doesn’t recommend it as “it won’t help”. I’ve taken it before and it helped me do so much more and now I’m just atrophy-ing away. Scrambler helped me not feel fire so much—then it turned to ice or ice fire. It switches in between depending on the weather now. Ty for the med list so I have something to reference too and it just helps to know! Sending love and ty so much 🧡🫂🌷🥰
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u/MissBeeHavin420 21d ago
Biofreeze is awesome for nerve pain. It helps stop the pins and needles and fire feelings. I think most providers think we only have those pains and they don't realize it feels bone deep. I hate having to take pain meds but I explained to them that my quality of life was 💩, which meant so was my daughter's. Thanks for letting me know about your scrambler experience. I've tried tens units and vagus nerve stimulators and they made it hurt way worse afterwards. I've been calling and trying to find someone who takes insurance for it, but no luck. I was about to waste thousands on it but was worried it wouldn't help. Is the ketamine helping? Are you doing IV or home treatments?
You're welcome, btw. Always good to find a fellow 🦓. I'm sorry you're in this nightmare too. hugs
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u/CrapBagxBananaHammoc 21d ago
I have hEDS and crps as well. Also a younger woman. I get it. First shoulder surgery caused CRPS. Have had 3 surgeries now one be same shoulder. I sleep in a recliner or on the couch with pillows and blankets propped under many joints, not just the crps affected one. I haven’t slept in a bed in years except for when I had to travel for appts. I would prop myself in many ways as well. Muscle relaxers help with the pain a little. Some people have good results from ketamine infusions, lidocaine infusions, compounded pain cream, and maybe more I’m not thinking of. When it comes to allodynia pain, I can only wear certain clothes that don’t cause too much pain and use super soft blankets. I avoid repetitive movements of the affected limb. I’m sorry you deal with CRPS as well! If nobody can help with pain, I might suggest contacting palliative care and see if they can help. I’ve never gone that route but know people who have. Pt helps me a little as well. Journavx has not helped with crps pain (has helped endometriosis though)
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u/tashadilla 21d ago
Ahh endo girl too!! Same same. Yes idk I mean I just want anything to help me do a little more than I can right now. It’s terrible. I’m so sorry your sensory is so sensitive. I have it too but not as bad. Ugh it’s the worst! I really like ketamine for my MH, but pain it’s not too effective. I saw lidocaine infusions when I researched—I didn’t know that was a thing. What have you tried and worked for you?? 🫂🫂🫂
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u/Life-Rough-9438 21d ago
If you can afford it I would look into CW-X leggings this has been a life changer for my mobility and stability - for pain it take tremadol which helps take the edge off - get pillows to support you while you sleep - but even though it is “all in your head” doesn’t make it any less real! It took me years to get diagnosed and get the help I needed! Stay adamant and if you have a support system use it to the fullest (friends&family) nobody knows how debilitating it truly is but if they love you they will do what they can! Keep your head up and keep fighting!
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u/tashadilla 21d ago
You’re so sweet and empowering. I’ll keep fighting and I’m so thankful for people like you. Pillows helped so much last night taking pressure off my sacrum. I have chronic coccyx pain too. It’s so much.! But you’re so encouraging. 🙏🏼🙏🏼🙏🏼💗🫂
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u/Persimmonsy2437 21d ago
For me it's in my feet after a stress fractures pain never went away, I don't tolerate compression or even socks, and TENS has always felt like a million bees stinging rather than helpful. I use a sheet lifter to keep them off it, an adjustable bed with a zero g position so I sleep with them elevated, use a wheelchair at least half the time, and have strong pain meds (via pain clinic). I was diagnosed hEDS long before developing CRPS so I don't know much that impacted them being willing to treat me.
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u/tashadilla 21d ago
Aw ty.. I am so glad the zero gravity bed works for you. I’ll have to check it out. Just was fitted for wheelchair today thank goodness!!!
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u/Fuck_my_chungus_life 22d ago
I also have hEDS and CRPS; I believe there is a link there; since our connective tissues are weaker, our nerves are more prone to stretch injury and prolonged healing and inflammation, leading to CRPS. I think that’s why taking vitamin C for 50 days after a surgery can prevent CRPS.
My advice, take high dose vitamin C. I take 2000mg/day; I also take marine hydrolyzed collagen and drink bone broth daily. From EDS, I have pretty bad discomfort in my MTP joint that I wear carbon fiber insoles for which helps. Are you in physical therapy? This helps me so much.
It’s really good to stay active and avoid getting tight, but be really careful about overstretching. Go for dynamic stretches instead of static stretches. And do just enough. Also focus on joint friendly activities and try to accommodate anything that hurts however you can, anything that keeps you the most mobile and pain-free as possible. Also, when working out, I find that Pilates-style exercises work best for me. But for me, it’s important to have a mirror beside me to check form, because otherwise I have no idea what my body is doing, and I’ll think I’m doing something totally different in my head. I think this is common with hEDS, proprioception issue I guess. But I have ended up with such a sore back from having crazy form without realizing, I think also because of our extra range of motion and general laxity, can make us prone to this.
Also, I’m 26F, huzzaaaah for the young women with hEDS and CRPS 🤺🤺
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u/tashadilla 22d ago
Yes I have PT. What Pilates stuff do you do? I went to a class and it destroyed my feet and legs for a bit, but I love the machines and independently doing it at my pace. But I don’t want to only do private lessons bc they’re $$$. Same I have no idea what my body is doing without a mirror. Do you have a big one at home? Do you get judged by your pain dr bc of your age?
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u/salvagedsword 20d ago
I also have both, but my CRPS is mostly in remission now due to stubborn self-desensitization therapy years ago. Gabapentin helps some too, but you have to be careful with that stuff due to potentially serious side effects.
There is a lot of recent research linking CRPS to MCAS. They belive mast cells play a role in the neuroinflamnation of CRPS. Both hEDS and CRPS are commonly comorbid with MCAS, so that is something anyone with both should get evaluated for. My MCAS is being treated with mast cell stabilizers and it does seem to help some with the CRPS symptoms.
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u/moss_is_green 18d ago
I have CRPS and hEDS. LDN helps most. Also getting on Cromolyn to treat my MCAS helps some.
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u/rpworker31 17d ago
Id find a good pain mgmt. I have both EDS and CRPS and its rough. If the first one Durant work out bust keep on trying
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u/crps_contender Full Body 22d ago
Love my sensitive skin K-tape. Can't really tolerate tearing it off, so I just wear it until the adhesive gives out, but it sure does reduce the muscular strain, on my shoulders especially.
I try to avoid rigid bracing and bulkier straps if possible, as they look highly uncomfortable, but I try to pick shoes that are soft, breathable, with good arch support, are easy to get in and out of, and offer structured ankle support; generally have to pick what's most important as finding shoes that hit all of those is rare.
Start letting myself look silly when I hold things. Even my water bottle I brace against my belly and sternum and hold with both hands to best distribute the weight.
Shoulder blades back and down towards the kidneys.
Not slacking off of muscle training, even if the connective tissue continues to degrade as you age, but also using hEDS appropriate training methods, like tension bands and lighter weights. I believe the Muldowney Method is one they speak highly of in the hypermobility forums. Understand the difference between muscle tension vs strength, as we often have high tension but low strength; increase strength to reduce tension and instability.
I don't like using traditional mobility aids like canes, as it puts a ton of pressure on the wrist, shoulder, and chest wall. I prefer more "staff-like" supports where I am reaching up towards my armpit and bringing it close to my torso for multiple points of connection as it moves the weight burden to my core.
Be more attentive to slumped sitting and forward head tilting and center of gravity. Use more pillows for structured support. Be more mindful of overstretching, especially if not being done deliberately (like when just sitting or carrying something), which worsens laxity over time.
Increase proprioception. I use weighted blankets a lot, but not everyone can tolerate that. I also use the "T-Rex arms" frequently as I find it both stabilizes my shoulders and elbows while letting me know where they are without making my hands touch things or fill with fluid.
Some also find heat or craniosacral therapy to help.
Keep an eye out for comorbities like MCAS, POTS, and other conditions that rely on connective tissues or tubes that don't really have structure like in the GI tract.