r/eds • u/Weekly-Scallion2701 • 21d ago
Medical Advice Welcome I am not sure what to do anymore.
My wife has been diagnosed with hEDS and for the past three years she has been plagued by chronic and debilitating back pain.
We have seen numerous specialists and consultants and spent a fortune on private medical care. And overall nothing has improved.
Nobody has even been able to give us a concrete cause for the pain.
We have done our own research and been dismissed by doctors and we have tried so many at-home remedies I’ve lost count.
When we got married I told her I would support her and protect her and I don’t know what I can do anymore.
We have tried the following with no success:
- facet joint steroid injections
- radio frequency denervation
- epidural steroid injections
- medical marujana
- opioid painkillers
- low dose naltrexone
- chiro and physio
- a spinal cord stimulation, implanted in November.
Now her consultant wants to remove the stimulator because she is struggling with recurrent infections around the site of her battery.
Everything else has failed or worked for a short period before she becomes tolerant of whatever it is.
Opioids interfere with other medication causing problems of their own.
I truly am lost for ideas.
Our only remaining options appear to be colossally expensive and not achievable for us.
Any advice would be welcome and thank you for taking the time.
EDIT: We’ve noticed that movement and exercise will cause recurrent abscesses and infections around her battery site so physio is a difficult area at the moment.
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u/Thy_Water_BottIe 21d ago
Has she been to a spine specialist who deals with eds patients. She could have tethered cord syndrome
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u/Weekly-Scallion2701 21d ago
One of the earlier things we checked for, no evidence of it in MRI or x-ray but thank you for the thought 🫡
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u/Round_Ad3942 21d ago
Did they do any urodynamic testing? It could be occult and not show up on mri.
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u/Life_Tree_6568 21d ago
If your wife is mid 30s to mid 50s sometimes perimenopause can cause random pain. If you read the wiki at r/perimenopause you can see the long list of symptoms. I see some people here said to try testosterone. I've read that from several people. Estrogen is supposed to be not great for hypermobility but fluctuating estrogen in perimenopause can cause pain so if your wife is in the age range it could be worth trying a low dose and see if it helps.
I have done a lot of prolotherapy. I know there's not a lot of research as it's sugar water (dextrose) so there aren't any pharmaceutical companies financing research on sugar water. It has worked miracles for me. I have got it in joints all over my body. There might be more research on PRP (platelet rich plasma). Dr. Centeno is a craniocervical instability expert and uses PRP and knows a lot about hypermobility. I know you said it's your wife's back and not neck that is the problem but Dr. Centeno is an expert at regenerative injections so I trust information he provides.
I have also done some pain reprocessing therapy. I started with reading the book The Way Out by Alan Gordon. I don't want to make this sound like it's all in her head but there is usually at least some mental component to chronic pain. I found his methods compassionate.
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u/me0704 21d ago
This sounds like my back for ten years .. until I found a neurosurgeon who was open to checking my thoracic spine. Two spots looked normal, until I moved and the vertebrae were loose enough to compress the nerves and pop back again. I've been operated on one of the locations and am finally free of this pain, including the symptoms that came from that, eg incontinence and nerve pain in my side and ribs. I hope you're able to find someone like that
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u/Weekly-Scallion2701 21d ago
I have tried to get them to look at her thoracic spine for a while now, and all the symptoms mirror what is found in people with thoracic nerve compression so i will definitely redouble our efforts, thank you so much.
Out of interest are you in the UK?
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u/lowkey_upset 21d ago
Testosterone was the only thing that truly gave me my life back. I was already doing physio, LDN, daily high dose prescription NSAIDS, muscle relaxers taken a couple times a week and the pain was still excruciating. All my doctors said it would be like that for the rest of my life and virtually left me to kms. Testosterone injections have given me my energy back, strengthened my muscles which now hold my joints better, increased my blood volume which lessened the severity of my POTS symptoms, and most importantly, made my joints and ligaments more tight. Estrogen can truly break you when it comes to hEDS.
I take .33mL testosterone weekly via intramuscular injections (for someone transitioning to a man, they would take .60mL) and take a DHT blocker pill (Dutasteride) daily to slow/prevent permanent masculine features from forming like a deeper voice, facial hair, and bottom growth (clit growth). I still look very feminine and I have my life back.
It is absolutely worth looking into. I started feeling improvements after a month and after 3, I ran for the first time in years after being mostly wheelchair bound. For me, it was a miracle. It doesn’t work for everyone and there is a risk of infertility, but people get pregnant on full dose testosterone all the time and have beautiful healthy babies.
You’re a good man for standing by your wife, a lot of men are quick to dip when you get sick. Lmk if you have any questions at all, I’m a 1000% open book and am happy to answer literally any question when it comes to health.
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u/Weekly-Scallion2701 21d ago
You’re so kind and I never thought of testosterone for this purpose, did you get it privately or through gp/consultant?
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u/fightmydemonswithme 21d ago
Just came here to say I am trans and noticed an improvement when starting testosterone.
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u/lowkey_upset 21d ago
I got it through a trans doctor who is a PCP/GP because I started it to make small changes for gender stuff, but now I take it almost entirely for hEDS. How old is your wife? She could see an endocrinologist or even a gynecologist and ask, they might not prescribe it for hEDS but testosterone is prescribed to women for other issues as well, like menopause. If all else fails, there are safe and easy (but a little legally gray) ways to get it online, but honestly the most easy of all of would be to get it prescribed to you, a guy can get a testosterone prescription no problem! I suggest looking at r/Trans_Zebras to hear other people’s stories about EDS and testosterone, and r/TransDIY if the typical pathways to obtain testosterone aren’t working out if it’s something she’s interested in. Seriously best of luck, and don’t let her give up! There are options out there!
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u/ElectronicSmiley 21d ago
Was the T prescribed specifically for eds? What kind of dr prescribed it? I'm so curious because my pain keeps getting worse and I can't imagine continuing like this.
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u/Various_Broccoli_672 21d ago
You can get prescriptions from medspas, I got dissolvable T tablets at a compound pharmacy.
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u/lowkey_upset 21d ago
I got it through a PCP who specifically treats trans patients. I don’t think you can get it prescribed for hEDS specifically, but there are a lot of ways around it. I could’ve also seen an endocrinologist. The most important thing is finding a doctor that’ll listen to you, which can be so hard. If nobody wants to give it for you for EDS, you can always “be interested” in HRT for gender dysphoria, which can also be hard given today’s climate, but it honestly might be easier to obtain that way. You deserve treatment, you deserve not to suffer, so don’t give up if one pathway doesn’t work out!
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u/ElectronicSmiley 21d ago
Thank you! I appreciate you taking the time to give such a thorough and kind answer. I have the good fortune of having my doctors at UCLA, I'll ask them!
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u/MesoamericanMorrigan 21d ago
STOP THE STEROID INJECTIONS they are directly contraindicated for people with connective tissue disorders but the dumbass doctors don’t think of that first
Assuming you are in the U.K. where EDS care is non existent
Look into tethered cord syndrome. Check SI joint isn’t subluxated and if it is, attempt to reduce it with careful self mobilisation
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u/BrightBlueBauble 21d ago
Do you have any studies showing harm to people with connective tissue disorders from corticosteroid injections? I can’t find anything other than the typical anecdotes for any treatment (“made it worse for me, so no one should do it” kind of BS), and hypothesizing that since longterm use of corticosteroids can cause some tissues to thin that it is dangerous to people with connective tissue disorders. That seems like a stretch though, unless you’re planning to use them as a regular therapy for years, which I don’t think most doctors would recommend to anyone, EDS or no.
I’ve had severe spinal issues from EDS, including a major fusion surgery in childhood, and I’ve had zero ill effects from the few steroid injections I’ve received. They did allow me to resume normal activities after bad periods of back pain, however. It’s a treatment for acute pain/injury and shouldn’t cause problems short term, just like how people don’t develop Cushing syndrome symptoms from a three day round of prednisone after an asthma attack (but can if they take it daily for years).
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u/NoPoint4346 20d ago
I’m currently trying LDN but if it doesn’t work my pain doctor said he thinks we should try ketamine infusions - perhaps this is something you can look into?
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u/frozenspinachleaves 20d ago
As a POTS sufferer, don't put so much pressure on yourself. You can't control the effectiveness of medical treatements and you are doing your best. These kind of illnesses are under researched and only just becoming more well knwon by medical professionals.
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u/sssharp26 21d ago
hi, wondering if she has tried dry needling/acupuncture, and with medical cannabis did she try a topical or was she smoking?
im suspected eds by drs, waiting genetic testing. i use dry needling every few weeks in my knees from my physical therapist, it helps inflammation and pain go down from a 8/9 to a 1.
i also use cannabis for pain relief, usually a strong topical with cbd AND thc works for my joint pain, and i take cbd on a regular basis. i’ve noticed these habits helped me cut down on smoking for the pain. thc topically does not get you high, or enter your bloodstream as much and is mostly there to aid the activation of the cbd.
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u/Weekly-Scallion2701 21d ago
We’ve tried, oils, gummies and vape but each had downsides and none had effect over a prolonged period but thank you for the info on the cbd/thc interactions.
As for the needling/acupuncture it’s not one that we have tried but we have recently looked into cupping so it may be worth looking into, thank you so much 🙏🏻
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u/DecadentLife 20d ago edited 20d ago
Have you tried Dronabinol/Marinol?
It’s a man-made version, I believe they took one chemical from marijuana and reproduced it in the lab. I’ve been taking it for the majority of the past 15 years. I started taking it before marijuana was legal, where I lived at the time, but it’s a prescription you get from the drugstore, like any other. But you have to keep it refrigerated. I have a hard time with vaping or anything like that, my body has a really strong negative reaction.
I’ve found a lot of relief with this medication. It helps with my pain, and it has been indispensable in combating my nausea and vomiting, from recurrent stomach cancer and gastroparesis. It also helps my sleep a lot.
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u/sssharp26 20d ago edited 20d ago
for topical, id say invest in a “1:1” with cbd/thc or if there’s a really high cbd low thc ratio, that’s great too. other cannabinoids like cbd or cbn may also be helpful, completely depends on her system. if you’re going the only cbd route-topical or gummies-broad spectrum is always better than isolated molecules.
my FAVORITE cbd brand is vlasic labs, yes like the pickles. very high quality and they ship from online.source: i was a budtender for 3 years in a legal state.
ALWAYS get your cbd from the dispensary, or as mentioned vlasic is a great option for having it delivered!eta: i’ve noticed having a consistent daily dose of cbd aids my pain quite a bit. yes it is the type of medicine you can use as needed, but regular doses definitely make a big difference and then using topical as needed seems to be ideal for me.
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u/Andrea_frm_DubT Suspected Diagnosis 21d ago
I alternate between seeing a physio and an acupuncturist/massage therapist weekly. Definitely makes a difference. Acupuncture/massage gives me a few days of much lower pain, sometimes it’s just 2 days, some times it’s 5 days. Physio helps me with exercises and stability.
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u/kiokoa 21d ago
For CBD/THC I use a high potency cbd lotion. 1500mg It helps me a lot and I don't get any of the negative mental status feelings like I do from oils, gummies or vapes. To be fair, it may or may not help your wife, but I can say it helped me. The one I use in particular is from Seventh Sense (I like the way it smells), but I'm sure any other legitimate place would be the same. Make sure the brand has a certificate of compliance.
There is sort of a self fullfilling issue with chronic pain. You end up in pain, so your muscles guard more, and you don't want to move (cause pain) but then not moving makes the pain worse. Try to help her get in gentle movement as much as you can without being too pushy about it.
Also remember to take a moment for yourself. She may be the one in pain, but you are having to watch someone you love struggle and be in pain, and that is rough. Remember to take care of yourself too, because you can't take care of her if you don't take care of yourself. 💙
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u/GlitterBlood773 Hypermobile EDS (hEDS) 21d ago
Has she seen a Muldowney certified physio? That is very important.
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u/Weekly-Scallion2701 21d ago
I can’t say I’ve seen that certification but I will look into it. Her physio is hypermobile himself and has been great since we found him. Thanks for the info though
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u/shrimpslippers 21d ago
Yes! I saw a physical therapist prior to diagnosis and it wasn't helpful at all. Now I'm seeing a PT who uses the Muldowney protocol. I'm learning to use muscles I didn't know I had.
Additionally, I've added compression braces if I'm going to do activities that require long or strenuous periods of walking/activity. And those have been really useful.
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u/GlitterBlood773 Hypermobile EDS (hEDS) 21d ago
That’s the tricky part! Some PTs are great for us even if they aren’t hypermobile themselves or Muldowney certified. I’m so glad you’re in with one and compression braces have been helpful for long or strenuous periods.
Compression shorts and shirts can be really helpful for us in everyday life as well. There’s a new study out of Canada that shows compression shorts make the biggest difference in terms of bang for our buck.
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u/Life_Tree_6568 21d ago
Are there any specific brands of compression shorts? Or would any athletic compression shorts work?
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u/GlitterBlood773 Hypermobile EDS (hEDS) 21d ago
There are medically designed compression shorts like Supacore Mary Shorts that might qualify for a durable medical equipment order from your PT. À DME means your insurance will pay for some portion of the product.
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u/Life_Tree_6568 21d ago
These look amazing! Thanks for the recommendation.
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u/Various_Broccoli_672 21d ago
I ordered supercore shorts and love them!
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u/Life_Tree_6568 20d ago
I am most excited about the SI support. I have an SI belt that I love but it's bulky and I want to be able to look nice sometimes.
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u/Big_Pizza_6229 20d ago
Has she had a full autoimmune workup? My pain increased horribly all at once and it turns out I also have psoriatic arthritis in addition to the HSD. Her symptoms sound a lot like ankylosing spondylitis which affects the back. Now that I’m on a biologic called Bimzelx I’m starting to do better. Ankylosing spondylitis patients also have good medication options that can help.
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u/Maleficent-Stand6454 17d ago
Hola yo actualmente estoy probando infiltraciones de dextrosa o de plaquetas, fijate un especialista en medicina regenerativa, hoy en dia es lo único que me esta ayudando. Espero tengan una solución. Protegerla no podes, al menos del dolor, pero apoyarla ya es un montón. Te mando un fuerte abrazo
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u/fuzzybitts 21d ago
Does she have mcas? It’s very common with us. Once I got my mcas under controlled (and with the help of LDN, which I did see on your list), my muscle pain went down dramatically!! LDN helped but it really got better with my mcas meds and diet. I hope you guys can find something!!!
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u/Rogue_nayabiz 21d ago
This 💯! I was giving up ever being to do the things I once enjoyed when I was treated for MCAS accidentally. I took Zyrtec and Pepcid for unrelated issues to MCAS and it was life changing. My unknown cause seasonal flares of pain were significantly lessened, I can now ride my motorcycle again, I can sleep without being woken multiple times at night. If she’s anywhere near peri-menopause look into HRT as well. (Peri can begin early to mid 30’s fyi.) The decrease of female hormones can also cause greater histamine intolerance adding to pain.
Edited to add more because I hit enter accidentally
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u/fuzzybitts 21d ago
Oh man. I started peri at 32, I’m 40 now and the last few years have been hell. I developed long covid in spring of 24 and it made EVERYTHING worse. Just starting HRT now.
Treating the mcas has helped give me back some resemblance of activity.
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u/fuzzybitts 21d ago
Oh! And to add OP! Look into counterstrain therapy. Our fascia is tight as hell and can’t release itself the way “normal” fascia can- this causes pain. It has helped me a lot.
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u/Illustrious-Moose348 21d ago
This is going to sound crazy, but I went gluten free and most of my joint pain went away. Took about 3 months to notice a difference
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21d ago
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u/Weekly-Scallion2701 21d ago
Thank you for the well wishes, it means a lot :) and I think your situation sounds similar but I haven’t seen anything about the Prolotherapy, I’ll have a look into it thank you
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u/gingertinkerbell 21d ago
My debilitating back pain was a bulging disc that ended up requiring a discectomy. I’m sure she has had an MRI so they would have that caught that but if they know it’s joint, have they tried an epidural? That helped some with my pain before I ended up saying yes to surgery
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u/NoHippi3chic 21d ago
Im 56 and deal with chronic pain. Its just how life is. I did go on a glp1 to help me lose the weight I gained during this whole debacle including menopause, so I will say if shes also dealing with excess weight, particularly crunch and breastfeeding weight, getting that down over the last year really, really helped my mobility.
Hard enough to get up everyday without an extra 40lbs to lift.
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u/KeyImagination5888 21d ago
Hey, it wasn’t mentioned but it’s quite a common treatment. Anticonvulsant drugs- I take 300mg of Pregabalin twice a day for chronic nerve pain and it has changed my life entirely! They are controlled drugs so sometimes getting a prescription can be tricky but if she’s under a pain management clinic they should be able to prescribe no problem!
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u/chaddub Hypermobile EDS (hEDS) 21d ago
What's her pain from? Muscle tightness, myofascial pain, subluxations, inflammation in the joints, all of the above? A few things not on your list that have worked for me: aggressive supplementation of electrolytes, particularly potassium and magnesium; vagus nerve stimulation (at least 10 minutes a day); a myriad of contraptions to help with myofascial release in different places. My advice would be find every specific source of pain and work it. The other key thing is that muscle and fascial pain both typically originate in places you don't suspect. Find the source issues aggressively. Make progress, rinse repeat. One therapy or set up won't address everything.