Loss of cervical lordosis (neck curve)

[pattismith]

also reffered as military neck;

@Mary @Daffodil @Gingergrrl who I think are affected as well.

Here my 2017 neck X ray, where I can see loss of lordosis, and arthrosis C4-C5 and C6-C7.

20% of asymptomatic people do have it, and most studies found no correlation between neck pain and loss of cervical lordosis, so I doubt that this condition is directly involved in my issue.

However, I Wonder if a slight C4-C5 and C6-C7 instabilities (or discopathies) are not showing up on this xray. it could explain the arthrosis lesions.

In this case, I Wonder if this instability could have any correlation with the loss of cervical lordosis...

My xray:

this xray if from someone with loss of lordosis and C5-C6-C7 discopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5324370/

 

[pattismith]

this korean study does not agree with loss of cervical lordosis begninity


Association between cervical lordotic curvature and cervical muscle cross‐sectional area in patients with loss of cervical lordosis
Seo Yeon Yoon
Department of Rehabilitation Medicine, Bundang Jesaeng General Hospital, Gyeonggi‐do, Republic of Korea
Correspondence to: Yong Wook Kim, MD, PhD, Department of Rehabilitation Medicine, Yonsei University College of Medicine, 50‐1 Yonsei‐ro Seodaemun‐gu, Seoul 03722, Republic of Korea.
First published: 25 March 2018



Abstract

Disruption of the cervical lordotic curve can cause undesirable symptoms such as neck pain, and cord compression.
The purpose of this study was to investigate the biomechanics of loss of cervical lordosis by measuring the cross‐sectional area (CSA) of the cervical muscles using magnetic resonance imaging (MRI), and to determine the relationship between cervical lordosis angle and cervical muscle status. The cervical lordosis angle was measured on standing lateral plain radiography using the posterior tangent technique in patients who complained of neck pain.
The CSAs of the cervical flexor muscles including the longus cervicis and longus capitis, the cervical extensor muscles including the splenius capitis and semispinalis capitis, and the sternocleidomastoid muscle, were measured at the maximum levels by axial T1‐weighted MRI. We compared neck muscle CSAs between the two groups, the correlation with cervical lordosis angle, and muscle status including CSA and imbalance. The CSA of the semispinalis capitis was significantly lower in the loss of cervical lordosis group, and the ratio of cervical flexor to extensor was significantly different between the two groups (P < 0.05). Partial correlation analysis revealed that the cervical lordotic angle was significantly positively correlated with the ratio of flexor to extensor muscle CSAs (P < 0.05).
There is a significant relationship between cervical muscle imbalance, including extensor muscle weakness, and loss of cervical lordosis.
An exercise program focusing on cervical extensor muscle strengthening and restoring the balance of flexor and extensor muscles is recommended for patients with loss of cervical lordosis. Clin. Anat. 31:710–715, 2018. © 2018 Wiley Periodicals, Inc.

 

[Daffodil]

@pattismith i did hear about trying to reverse that through some kind of exercises or brace or pillow or something i cannot remember. did you have other imaging?

 

[Mary]

There is a significant relationship between cervical muscle imbalance, including extensor muscle weakness, and loss of cervical lordosis.
An exercise program focusing on cervical extensor muscle strengthening and restoring the balance of flexor and extensor muscles is recommended for patients with loss of cervical lordosis. Clin. Anat. 31:710–715, 2018. © 2018

This makes sense. I think my lordotic curve is actually reversed. and I think it quite possibly stemmed from something very heavy falling on my head at age 11. My neck muscles are always tight, even in the absence of stress. I do need to see someone who could guide me as to whether I should do exercises or use a brace sometimes, etc. I'm not quite sure who to see for this.

Disruption of the cervical lordotic curve can cause undesirable symptoms such as neck pain, and cord compression.

And the possibility of cord compression is a little scary! It's something I've wondered about as well.

Are you planning on any treatment? What are your symptoms related to your neck, that you're aware of? I don't have neck pain by the way, but definitely have stiffness.

 

[pattismith]

And the possibility of cord compression is a little scary! It's something I've wondered about as well.

Are you planning on any treatment? What are your symptoms related to your neck, that you're aware of? I don't have neck pain by the way, but definitely have stiffness.

Well, I have neck pain for some years, but neck pain came many many years after the start of my illness.
In fact, the neck pain started only after some bad chiropractor practice.

My rhumatologist told me I have cervical arthrosis, so it was consistent with my pain, but I never imagine that my illness (or part of it) was potentially a consequence of my neck. (needless to say that none of the docs I met imagine this either)

It's only some weeks ago, when the CCI/AAI discussions came more strongly on PR that I thought I could have missed something in my neck investigations.

I suffer from headaches of different kind, with different occurrences through the day. These headaches are really bad and prevent my brain from functioning.

I also suffer from widespread pain/muscle weakness/tendinitis/PEM, but since I started testosterone (+ DHEA now) all these symptoms are under control/abolished.

On the other hand, Testosterone didn't help with my headaches, and even worsened it at first.
Several causes can be involved and investigated, CSF leak, intracranial hypertension (possible internal jugular compression), or the last one = neck headache.

One of my headaches is present before I wake up, so I thought it could be related to the position of my head/neck during the night (lying supine with a confortable pillow).

I did an experiment and removed my pillow, and tested different positions (most of them more or less comfortable), and my morning headache disappeared.

For this reason, I looked for my old neck imaging (RMI and X ray), in order to understand what was happening, and found this loss of cervical lordosis.

I had a trauma when I was 13 , but I don't know if it's related or not. I don't know either if the loss of my curve is linked to an underlying discopathy, or not. But I found that I can improve my headache by lying with positions that I would never have thought they could give me any relief.

This is really something to investigate for any of us who suffer from headache and neck issue.

 

[Mary]

I also suffer from widespread pain/muscle weakness/tendinitis/PEM, but since I started testosterone (+ DHEA now) all these symptoms are under control/abolished.

That's quite impressive and I'm very glad to hear that for you! I took DHEA for several years and never noticed any difference (though it might have helped prevent me from getting worse). My testosterone levels are always normal for a female.

But I found that I can improve my headache by lying with positions that I would never have thought they could give me any relief.

I'm really glad to hear this! Do you have a doctor or someone to work with on your neck issues? If you don't, it seems like that would be a good thing to do.

My rhumatologist told me I have cervical arthrosis, so it was consistent with my pain, but I never imagine that my illness (or part of it) was potentially a consequence of my neck. (needless to say that none of the docs I met imagine this either)

I think this is new information for almost all of us! All the posts about CCI have made me think about taking my neck problems more seriously. But I don't have headaches or pain, just stiffness. Though of course that doesn't mean my neck has no relation to my ME/CFS issues - it may, or may not. But I should find out! I do have arthritis in my neck as well but again no pain.

I have such a serious mistrust of doctors, I'm afraid to go to any. I went to see an orthopedist a couple of years ago for shoulder problems. And he was pretty bad. he recommended one exercise that I just felt intuitively would hurt me. Finally at my request he referred me to PT and the PT agreed that it was not a good exercise for my condition. The PT did help me. So I'd like to just refer myself for PT!

 

[pattismith]

Mary, no doc is helping me, I didn't find any willing to help and was discouraged as well

That's quite impressive and I'm very glad to hear that for you! I took DHEA for several years and never noticed any difference (though it might have helped prevent me from getting worse). My testosterone levels are always normal for a female.

It's not the DHEA that gave me relief, it's testosterone. I added DHEA later when relief was already achieved with Testosterone.

My testosterone level was also in the normal range for a female of 51, but the relief I got from testosterone was only achieved with supra-physiological supplementation. I tried several dosages, and controled my blood testosterone so was able to closely monitor what I was doing and what dosage was effective for me.

Testosterone has shown some benefits for fibro women, so I guess that I may fall in this basket.

 

[Mary]

Mary, no doc is helping me, I didn't find any willing to help and was discouraged as well

I'm so sorry to hear this. I know unfortunately it's par for the course for us, but it's still wrong!

I tried several dosages, and controled my blood testosterone so was able to closely monitor what I was doing and what dosage was effective for me.

How were you able to monitor your levels so closely? wouldn't this mean frequent blood tests?

I don't have fibro so don't fit into that basket, but I'm very glad the testosterone helped you so much!

 

[Gingergrrl]

@Mary @Daffodil @Gingergrrl who I think are affected as well.

Thanks for tagging me @pattismith and you have a great memory! My MRI's (in 2010 and 2018) said "loss of lordosis" and the earlier one showed stenosis but the more recent one did not.

I am having excruciating neck pain right now which is part of why I have not been typing on the board as much. I really overdid it yesterday b/c I had to take my dog to the vet by myself. A family member was scheduled to help me but was then ill himself, and it was a very important appt, so I took her myself. It was the first time I have lifted my dog into and out of the car by myself (four times total for the round trip) and last night I had severe neck pain, lower back pain, headache, nausea, and then managed to trigger a POTS episode .

I didn't realize how bad it was until I bent down to pick up my charger cord that my step-daughter had left in her room which triggered the POTS episode (but it never would have happened if I hadn't lifted my dog 4x getting her to the vet earlier that day). I was gasping for air where I could barely talk (and luckily was on the phone with my best friend when it happened who was very concerned and stayed on the phone until it passed). I got very dizzy and had to sit down and ended up lying flat with ice on my neck for hours.

I had plans today but canceled them (with the same friend who totally understands the situation). I guess I should have canceled the vet appt yesterday but it was a very important re-check (b/c my dog has vaccine induced vasculitis) and this vet (specialist) will be out of town for 2 wks and I needed her to tell me if my dog was better or worse and refill her meds based on the appt. But lifting her KILLED my neck and the neck issues triggered the headache, nausea, and POTS episode (and this literally has not happened in over a year or more b/c I know not to push beyond my limits which includes lifting anything heavy) ... my dog is only 15 lbs but this is very heavy for me.

Sorry for this long rant but I do wonder if the loss of lordosis in my neck (or the cervical radiculopathy) or another issue is at the core for me? I do not have CCI and Dr. B viewed my scans and said 100% I do not have CCI. I also have already done several months of PT (last year) and probably should start doing the neck exercises again at home (which I had stopped).

In this case, I Wonder if this instability could have any correlation with the loss of cervical lordosis...

I have wondered about this, too.

This is really something to investigate for any of us who suffer from headache and neck issue.

What other types of investigations could be done? My MRI showed loss of lordosis and radiculopathy (but not CCI/AAI), and I did PT which helped somewhat but there was no permanent change in neck weakness or pain (or the pain that shoots down my right arm). The PT definitely helped my overall muscle weakness (from 4 years using a wheelchair) but if I'm being honest, it did not help my neck pain beyond the momentary improvement from light traction, ultrasound, heat, etc.

I would love to be free of neck pain, it would be amazing but don't know what else to try? I bought this device on Amazon (cranio cradle) and it has helped my lower back pain but not my neck pain.

 

[Mary]

I do wonder if the loss of lordosis in my neck (or the cervical radiculopathy) or another issue is at the core for me?

If not at the core, it certainly seems like one those must be a significant factor! I think it's very telling that lifting your dog would cause such severe symptoms. But it makes sense in light of everything I've been reading about neck issues and the spinal cord, etc.

What other types of investigations could be done?

I don't know, but there must be something. I need to do investigating of my own for my neck and am not quite sure where to start. On another thread members were discussing upper cervical chiropractors - they're trained specifically to deal with the upper cervical vertebrae. I did see one last year who adjusted my atlas vertebra but I felt no different afterwards, though it does help some people. But it didn't do anything for my reverse lordotic curve. I want to explore some more and see if there are exercises or anything else I can do to help my neck.

There are chiropractors who belong to NUCCA, National Upper Cervical Chiropractic Association though there are other chiros who do upper cervical work also.

I'm wondering if a brace of some type might help you? or if wearing one helped, it would be another clue as to what's going on. You do need someone knowledgeable to help you. I think it would be good if you made this a priority. For all those symptoms to be triggered by picking up your dog, your neck and spine issues might be a big factor in your recovery.

 

[pattismith]

This article from a private practice may indicate a possible improvement for loss of lordosis (neck and lumbar sine) with physio:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6220102/

To present the case of the dramatic relief of low back pain, leg pain and disability in an older female with osteoarthritis, lumbar spinal stenosis and hypolordosis of the cervical and lumbar spine.

[Participant and Methods] A 66-year-old female presented with chronic low back pain, right leg pain, numbness and weakness. Despite being recommended for surgery, the patient sought alternative treatment. The patient was treated with Chiropractic BioPhysics® rehabilitation of the spine with the objective to increase the lumbar and cervical lordoses. Cervical and lumbar extension exercises and traction were performed as well as spinal manipulation. Treatment was performed approximately three times per week for 6.5 months.

[Results] Re-assessment after treatment demonstrated significant reduction of low back pain, leg pain and other health improvements. X-rays showed structural improvements in the cervical and lumbar spine despite advanced osteoarthritis.

[Conclusion] Lumbar and cervical hypolordosis subluxation may be increased in those with spinal deformity caused symptoms, despite the presence of osteoarthritis and degenerative stenosis of the spine. Spinal x-rays as used in the assessment and monitoring of patients being treated with contemporary spinal rehabilitation methods are not harmful and should be used for routine screening purposes.

 

[SlamDancin]

Patti this is really interesting thank you. I have scoliosis and a few other spinal issues and this reminded me that I have this exact thing. I just knew it as not enough curve in my neck so thank you for alerting me to the actual name. I’m going to get the recommended CCI/AAI imaging soon since I have so many other structural issues in the area that it just makes too much sense.

Please @Mary be careful with PT. You think doctors don’t understand ME/CFS? PTs are even worse. They pushed me too fast and it was really crashing so I started doing my own at home. Probably 6 months or more into it now with maybe 30-50% improvement in baseline energy but almost 90% reduction in acute disabling PEM. I’m also taking Mestinon and Etizolam as well as a number of other supps and a few meds and hormones. I believe PT or surgery is going to be necessary in a huge number of ME/CFS patients because my body had bad tortuousity, and only as I unravel that have I been able to avoid PEM for example.

 

[Gingergrrl]

I think it's very telling that lifting your dog would cause such severe symptoms.

I'm sorry my reply is so delayed and that I am not able to reply to other threads where I have been tagged. I have had excruciating neck pain for about 48 hours which was a delayed reaction to lifting my dog into the car (4x total) to get her to and from a vet appt on Fri morning.

I cannot express how much I regret doing this and wish that I could go back in time. I feel like I have whiplash and my head is too heavy for my neck to support. My right shoulder is spasming and my right arm is like a limp strand of spaghetti. It is causing headache & nausea and I can barely turn my head to the side. The only things that help are pain medication and putting ice on my neck (and using a thick ice pack to create gentle traction).

I do not have a cervical collar but am now thinking of buying this traction device that my former PT recommended. It's not an over the door device (which I would not be physically capable of setting up or doing by myself) and it is a device that you use lying flat on the floor and I used it several times at the PT clinic last year. I took photos of it and need to find it on YouTube and re-watch the instruction video and decide if I want to buy it. I would try it the first time with someone with me and not by myself (if I do buy it).

I had plans on Sat and Sun (today) but had to cancel everything and the only thing I did was go to CVS to pick up some prescriptions before I ran out. Otherwise I am needing to lie flat with ice on my neck and it is very painful to type (which is a bummer b/c there is a lot that I need to do on the computer and also would love to reply to many threads, PM's, and e-mails).

I am afraid that I have screwed up my entire remission but logically I know this is not true and that this is a temporary set back. The neck pain is just so intense that it is making me feel very hopeless and making me question everything.

Edit: It actually feels like my neck is pushing on my throat but I don't quite have the words to explain the feeling. It is not the feeling of when your throat internally narrows from an allergic reaction vs. this feels like something external.

 

[GypsyGirl]

@Gingergrrl I totally understand this feeling of hopeless questioning. Don't panic yet. Any neck injury takes time to heal - even when it's not instability. Ice often. Epsom baths help take the pressure off. Lay flat for a while, don't push it. If it doesn't hurt, try some gentle neck isometric exercises like chin tucks. Try appropriate anti-inflammatories (I use a turmeric/boswellia blend and topical prescription gel) to promote healing. Frequent protein to build up any strained muscles. Consider a neck brace to stabilize (but only for a few minutes and day or you'll decondition muscles). It's a lifesaver for trips and "wobbly head" moments; I have a Miami j and a basic Philadelphia collar. I'd caution traction during the beginning acute injury stage because it could worse injury. It could be useful to get an evaluation from a chiropractor - again, with caution. Upper cervical is a more gentle umbrella term for that method of chiropractic. If you go, look for someone who specifically does low velocity adjustments, and will not twist/pop you or take you out of range of motion. Or a very experienced manual therapist (cranialsacral, cranial osteopathy, osteopathy) who can help you discern the problem and help you figure out what to focus on healing.

there - that's plenty of ideas to put in your pocket. Life and little accidents happen. Take heart, and be extra kind to yourself.

 

[Gingergrrl]

@Gingergrrl I totally understand this feeling of hopeless questioning. Don't panic yet. Any neck injury takes time to heal - even when it's not instability.

Thank you and your post was very reassuring and I hope you don't mind if I ask you a few questions. I need to backtrack and read the rest of this thread, too.

Ice often.

I have been doing non-stop ice and have all different kinds of ice packs and the ice bandana that you wear around your neck. Ice is very helpful.

Epsom baths help take the pressure off.

I actually don't tolerate epsom salt and it has given me respiratory depression in the past (b/c of my autoimmune disease, not my neck). I wish this was an option for me.

Lay flat for a while, don't push it. If it doesn't hurt, try some gentle neck isometric exercises like chin tucks.

I have been lying flat and doing chin tucks which are extremely helpful (and one of the recommendations that my former PT gave me). I wish she had not left the clinic. Even doing chin tucks while sitting in chair is very helpful.

I feel pressure on the front of my throat, like I hear of people speak about with thyroid issues, and I do have Hashimoto's Disease, but I have had it since 2013 and never felt this pressure until I injured my neck lifting my dog so I know it is from the injury and too random to be thyroid related. I am also extremely thirsty which is odd (for me) b/c since I got ill, I have a complete lack of thirst and have to force myself to drink fluids.

Try appropriate anti-inflammatories (I use a turmeric/boswellia blend and topical prescription gel) to promote healing.

I am allergic to NSAIDS but have not tried the ones you just mentioned (as far as I remember). Do you know what the gel is called? The only gel I currently have is arnica gel.

Consider a neck brace to stabilize (but only for a few minutes and day or you'll decondition muscles). It's a lifesaver for trips and "wobbly head" moments; I have a Miami j and a basic Philadelphia collar.

I just Googled these collars and was wondering, how does someone decide between a miami or philadelphia collar (and do you have to take measurements or are they adjustable)? The muscles that I injured are all on the right side of my neck and arm (not the left side) consistent with all my past injuries.

I'd caution traction during the beginning acute injury stage because it could worse injury.

That is interesting and I didn't know that and really feel like I would benefit from traction. (I'm sorry that I have taken your thread off track Patti

It could be useful to get an evaluation from a chiropractor - again, with caution. Upper cervical is a more gentle umbrella term for that method of chiropractic. If you go, look for someone who specifically does low velocity adjustments, and will not twist/pop you or take you out of range of motion. Or a very experienced manual therapist (cranialsacral, cranial osteopathy, osteopathy) who can help you discern the problem and help you figure out what to focus on healing.

I had horrible experiences in the past with two different osteopaths. I had an excellent PT but she moved away. I had an okay/decent chiropractor but my ex-husband and I often saw him together, and I am not comfortable seeing him now. I do have a TENS unit at home that I might try when I feel a little better (that was from my former chiropractor).

there - that's plenty of ideas to put in your pocket. Life and little accidents happen. Take heart, and be extra kind to yourself.

Thank you and I feel so discouraged and hopeless right now (from this and other issues). I will start a new thread later. But am going to reply to stuff I missed from this one. I don't care if typing increases the pain, I want to ask some questions.

 

[Gingergrrl]

I want to reply to a few things that I missed...

If not at the core, it certainly seems like one those must be a significant factor!

I wanted to clarify what I wrote earlier (and most likely I am not making sense ) but I meant that the neck issues are at the core of my current problems but that autoimmunity was at the core of my larger illness. Or that I had both an autoimmune and a structural neck problem? I think that makes the most sense (in my case) b/c the autoimmune treatments put a huge part of my illness into remission (the lung weakness, allergic reactions, inability to walk without wheelchair, etc) but the treatments did nothing for my neck issues. I don't think there is a connection between my neck issues and autoimmunity (vs. everything else was connected to autoimmunity for me -- LEMS symptoms, POTS, MCAS, Hashimoto's, etc). But the neck/structural issues and pain seem separate?

There are chiropractors who belong to NUCCA, National Upper Cervical Chiropractic Association though there are other chiros who do upper cervical work also.

Thank you @Mary and I will look into NUCCA chiropractors. I had heard this term before but never knew what it meant. Do you know of someone in my area? I know we've talked about all of this **many moons ago ... but now that I can walk and drive, I have more options of where I can go.

I'm wondering if a brace of some type might help you? or if wearing one helped, it would be another clue as to what's going on. You do need someone knowledgeable to help you. I think it would be good if you made this a priority.

I am wondering if a brace might help me, too, but also feel like I need someone knowledgeable to help me. It was so challenging to find my former PT and really wish she had not moved away. Although I know that I can text her and she might be able to give me some info.

For all those symptoms to be triggered by picking up your dog, your neck and spine issues might be a big factor in your recovery.

I was totally fine picking up my dog in the moment (which would have been IMPOSSIBLE for me before) and this reaction was delayed and the most severe one that I have had. But this was also the most I have physically pushed myself since getting better. But the level of reaction it triggered makes me question how much better I really am

Cervical and lumbar extension exercises and traction were performed as well as spinal manipulation. Treatment was performed approximately three times per week for 6.5 months.

This was interesting and I only worked with my PT once per week for 3 months (vs. 3x/wk for 6.5 months in the article). I would have happily worked with her longer but she moved and her replacement was horrible.

 

[GypsyGirl]

Thank you and your post was very reassuring and I hope you don't mind if I ask you a few questions. I need to backtrack and read the rest of this thread, too.

Sure!

I actually don't tolerate epsom salt and it has given me respiratory depression in the past (b/c of my autoimmune disease, not my neck). I wish this was an option for me. .

Oh no! Then not Epsom. For me, lying in a hot bath and can some of the pressure off my neck/head even without Epsom. My head feels like a pumpkin on a toothpick, so anything that lessens the effects of gravity for a few minutes help. And the heat can help the neck tightness.

I am allergic to NSAIDS but have not tried the ones you just mentioned (as far as I remember). Do you know what the gel is called? The only gel I currently have is arnica gel.

The gel is generic Voltaren, or diclofenac sodium 1% gel - but it's an NSAID. I can't tolerate long term oral NSAIDs but this works for me.

The turmeric/boswellia blend is Terry's Naturals Extra Strength Curamin, 1 a day to start, titrating to 6 daily til inflammation is managed.

I tried deep tissue CBD salve (from hemp, not THC, not psychoactive) a few months ago from Nacher apothecary and find it pretty helpful.

I just Googled these collars and was wondering, how does someone decide between a miami or philadelphia collar (and do you have to take measurements or are they adjustable)? The muscles that I injured are all on the right side of my neck and arm (not the left side) consistent with all my past injuries.

I searched a bunch of support groups and saw those commonly listed for Ehlers Danlos & neck instability (and Aspen Vistas are mentioned often too). Then I called local orthodists, and they said they just needed a doctor's prescription and would order whatever I needed to try on, measure, and made sure it was the right fit. I requested those models and tried them all on to choose.

I had horrible experiences in the past with two different osteopaths. I had an excellent PT but she moved away. I had an okay/decent chiropractor but my ex-husband and I often saw him together, and I am not comfortable seeing him now. I do have a TENS unit at home that I might try when I feel a little better (that was from my former chiropractor).

Thank you and I feel so discouraged and hopeless right now (from this and other issues). I will start a new thread later. But am going to reply to stuff I missed from this one. I don't care if typing increases the pain, I want to ask some questions.

I'm so sorry. Finding a good manual therapist can be like finding a needle in a haystack. I've had some amazing experiences and some awful ones, and I haven't figured out to pinpoint the search yet. I have a TENS unit and really love it for deep achey pain in my shoulders or glutes and walk around with electrodes sticking out like a bionic woman.

 

[Gingergrrl]

Thank you for all of the info GG (from the other GG )

The gel is generic Voltaren, or diclofenac sodium 1% gel - but it's an NSAID. I can't tolerate long term oral NSAIDs but this works for me.

I completely forgot until reading this that my main doctor prescribed Voltaren gel for me to try back in 2015 but I never did b/c I was too afraid that I might be allergic to it (at that time). It ended up in a box of meds that is now at my parent's house (when I lost everything to mold). I have no idea if it is still in that box (and if it is, it is probably long expired) but am now curious to check and possibly try it on my neck.

The turmeric/boswellia blend is Terry's Naturals Extra Strength Curamin, 1 a day to start, titrating to 6 daily til inflammation is managed. I tried deep tissue CBD salve (from hemp, not THC, not psychoactive) a few months ago from Nacher apothecary and find it pretty helpful.

Both of these are now on my list of supplements/ products to Google. Do you know if there is a Curcumin gel (transdermal for skin) or if it only comes in oral supplement form? I think I asked this in another thread today but am now not sure which one?! I am also very interested to try some kind of CBD oil on my neck to see if it helps (from hemp, not THC like you mentioned).

I searched a bunch of support groups and saw those commonly listed for Ehlers Danlos & neck instability (and Aspen Vistas are mentioned often too). Then I called local orthodists, and they said they just needed a doctor's prescription and would order whatever I needed to try on, measure, and made sure it was the right fit. I requested those models and tried them all on to choose.

Thank you for explaining this process and I had not heard of an "orthodist" before... which is now also on my list of things to Google.

I'm so sorry. Finding a good manual therapist can be like finding a needle in a haystack. I've had some amazing experiences and some awful ones, and I haven't figured out to pinpoint the search yet.

I have no idea how to do this either but it is another thing that I ultimately want to figure out.

I have a TENS unit and really love it for deep achey pain in my shoulders or glutes and walk around with electrodes sticking out like a bionic woman.

Luckily I do have a good TENS unit and need to find 30 min to use it soon. I found that it can help the pain while I am using it but then it returns as soon as I stop. It works well on my shoulder and arm pain but I don't put it directly on my neck

 

[Mary]

Thank you @Mary and I will look into NUCCA chiropractors. I had heard this term before but never knew what it meant. Do you know of someone in my area? I know we've talked about all of this **many moons ago ... but now that I can walk and drive, I have more options of where I can go.

I don't know of any where you live, though someone doesn't have to belong to NUCCA to specialize in upper cervical issues. nucca.org does have a search feature for chiros who belong to NUCCA. I also think sometimes the term "nucca" is used to describe chiros who specialize in upper cervical issues, whether or not they belong to that organization. So I'd also do a search for upper cervical chiropractors. I'm working on this now for myself, trying to find someone close to me who does this work.

I am wondering if a brace might help me, too, but also feel like I need someone knowledgeable to help me. It was so challenging to find my former PT and really wish she had not moved away. Although I know that I can text her and she might be able to give me some info.

Right - you absolutely need someone who is knowledgeable to help with this. That's too bad your PT moved away! It's great though that you can still contact her. I'm sure it's worth a shot!

Keep us posted

 

[Gingergrrl]

So I'd also do a search for upper cervical chiropractors. I'm working on this now for myself, trying to find someone close to me who does this work.

Thanks, Mary, and I am going to start researching all of this soon.

Right - you absolutely need someone who is knowledgeable to help with this.

That is the problem and it is so hard to find someone truly knowledgeable. I had decided a long time ago that if I could improve my other symptoms (that kept me wheelchair bound) that I would never ask for anything ever again and could certainly live with the neck and arm pain. But now that I am able to do more, the pain is only increasing and I am re-thinking all of this... that maybe there is something that can be done that I have not yet tried that could reduce my neck pain and allow me to do even more without suffering for days b/c I tried to lift my dog or lift my mattress to change my sheets, etc.