Incessant back pain from lying in bed all the time. What to do?

[overtheedge]

So I'm in bed something like 22 hours of the day at this point with how bad things are getting

I'm doing what i can to move around in bed while awake, lying on back most of the time cause it's most comfortable. Sometimes i'll put a pillow under my neck and shoulder area, doing this shifts the weight from my back to my upper back and neck as well as to my hips and legs.


Lie on my side some but i try to sleep on my sides and it is hard to sleep if i put a lot of pressure on my sides during the day since it makes my sides more painful when i try to sleep


Lying on stomach is uncomfortable, feel much worse, hard to breathe due to weight of lifting my body to breathe, neck bent over to the side also makes it difficult and the spine type neck pain and pain at the base of the spine aren't fun either.


The worst thing is probly how difficult it makes sleeping. At the end of the day the pain is always much worse.


I've tried ice packs, tens units of both the commercial and professional grade, pain patches, massages which made pain worse, epsom salt baths, heating pads and hot showers which made pain worse, acupuncture which makes pain worse than anything else will, acupressure mat which makes things worse, airmattresses of a certain type that shift weight around every 10 min or so that they use for the old folks to prevent bedsores but it is too firm even at softest setting and only makes things worse. Ive tried tylenol without effect, cant use most other otc pain meds due to IBD, NSAIDs irritate the gut and all.

The only thing that actually worked for me is a memory foam mattress. Back when i had a regular spring mattress things were much worse but my energy was better then and I was out of bed more so sleep wasn't so much a problem since the pain was reduced, not to mention sleep was overall easier when i my CFS wasn't so bad. I used a memory foam topper on the old spring mattress which worked ok for a bit but eventually i would somehow start feeling the hard parts of the bed through it slightly, not to mention the spine pain from the memory foam topper was bad.

Spine pain from a full memory foam mattress is much easier to manage, though, I should note i didn't have any spine pain when i slept on a regular mattress without a memory foam topper. Can't imagine how bad things would be right now back/side/front pain wise if i still used an innerspring mattress or how bad spine pain would be if i used a memory foam topper on an innerspring mattress, even the 1inch toppers would make spine pain much worse.


I tried a regular air mattress but it was too hard somehow though i didn't try a comforter on it but i don't know how much that would really do when im in bed all day.



Anyone know of any ways of treating pain of this sort?

 

[ryan31337]

Sounds rough, I'm sorry @overtheedge.

Its not a direct answer but have you ever been evaluated for Inflammatory Back Pain? Or have any other indications of inflammatory arthritis? Here's a good resource: https://nass.co.uk/wp-content/uploads/2018/11/Physiotherapy-modules-1.pdf

Your IBD is a major risk factor for spondyloarthritis. Other red flags you mention include worsening with inactivity, worsening at night, lumbar and neck involvement. There is a lot of crossover and with pre-existing IBD your gastroenterologist should refer you to rheumatology at the first hint of joint involvement.

 

[andyguitar]

Have you ever tried the herb Cats Claw?

 

[ryan31337]

I'm sure @andyguitar's advice is meant with the best intentions, but as someone with axial spondyloarthritis I can confidently say it would be very unwise to try and treat this yourself without first getting a professional opinion and ruling out inflammatory arthritis, especially given your major risk factors.

Cat's Claw does work in a similar way to some of the biologic drugs used to treat inflammatory arthritis and may improve your symptoms, but this is dangerous in itself because you could mask the severity of the condition. We're talking about the potential for a progressive, organic disease here that causes irreparable damage to your spine and joints if not treated & monitored properly.

 

[Lucky luke]

Also had a lot of backpain because of a flu and lay down 90/95 % of the day.
Sorry that you have to go through is.
But i am a stomach sleeper. Can’t sleep on my back.
neckpain from sleeping on stomach i solve by turning my head more to the middle.
Not lay on my ear but the pillow next to my nose. Allmost like on a massagetable with a hole in it.
Maybe some variation with a bodypillow or a pillow under stomache?For a side/stomache/spoon position.
They collect a lot of dust so 2 pillows is better.
Also i put my knees on the floor on something soft.
My upperbody on the matress and pillow to get relief.
But bed has to be high enough for that.
Also a too hard spring matress was a problem.

 

[Mary]

@ryan31337 - did you see this thread about baking soda potentially helping autoimmune illnesses, including rheumatoid arthritis? I'm not suggesting that @overtheedge treat him or her self without getting evaluated for spondyloarthritis, but baking soda might be a potential safe treatment if they do. There appears to be debate as to whether spondyloarthritis is autoimmune or autoinflammatory, and I'm not sure of the difference, but baking soda might help in either case:

Pathogenesis of spondyloarthritis: autoimmune or autoinflammatory?
. . .
Growing evidence indicates that increased responsiveness of innate immune cells such as macrophages, mast cells and neutrophils drives inflammation in SpA

https://www.ncbi.nlm.nih.gov/pubmed/22488076

We tested the hypothesis that oral NaHCO3 intake stimulates splenic anti-inflammatory pathways. Following oral NaHCO3 loading, macrophage polarization was shifted from predominantly M1 (inflammatory) to M2 (regulatory) phenotypes,

https://www.ncbi.nlm.nih.gov/pubmed/29661827

 

[keepontruckin]

Some people find gabapentin very helpful when nothing else has helped before.

 

[ryan31337]

Hi @Mary,

Thanks for the links, i'll check them out.

So the pathogenesis of spondyloarthritis is multi-factorial, with many genetic and environmental factors involved. You tend to see different things helping different patients: things like dietary change, testosterone supplements, CBD products etc. I'm sure for some people there's utility in taking baking soda and cats claw too.

I personally saw a good reduction in inflammatory symptoms from initiating a ketogenic diet. But it did not put the disease into remission, I still ended up with flares that damaged my spine. I'm all for experimentation and tinkering with off-label and unproven treatments in diseases that don't have established treatment guidelines and aren't necessarily progressive, but you shouldn't be doing that with an organic disease like Spondyloarthritis/IBD.

I don't mean to suggest Spondyloarthritis is any worse or more 'real' than ME/CFS, but because we do understand more about the consequences of the disease it would be very unwise to not take the drugs with proven efficacy, before damage is done and it is too late.

Anyway, this is all conjecture until the OP gets it properly assessed. Normally you'd never wish something like SpA on someone because of the potential long-term consequences, but when you're already that ill and nothing else has helped...it could be a blessing. Biologics can have amazing effects.

Cheers,
Ryan

 

[keepontruckin]

Are people with cfs more likely to get spondyloarthritis as well? Is there a connection?

 

[ryan31337]

Hi @keepontruckin,

I'm not aware of any specific increased risk of SpA with ME/CFS. I would hazard a guess that in some cases SpA is a missed diagnosis and ME/CFS may not not have been the cause of the fatigue and other symptoms. It might also be the case that if someone's ME/CFS root cause is another type of unknown autoimmunity they may be at increased risk of developing SpA later.

Its a tricky condition because the delay to diagnosis is often approaching 10 years. Only in the past decade or two has understanding improved, especially in Axial SpA, where its better considered a spectrum disorder and not limited to clear and obvious Ankylosing Spondylitis cases. I went for almost 20 years with mild symptoms until it became more aggressive.

Ryan

 

[Bowser]

ICES PEMF is supposed to work really well for many forms of chronic pain.

I know what you might be thinking. Yes most PEMF devices are mostly pseudoscience, and it has a very bad reputation in mainstream research.

However ICES was developed by Dr. Robert G Dennis, one of the original inventors of PEMF at NASA back in the late 80's IIRC.

PEMF is approved by the FDA for certain applications, further giving credence to its legitimacy. Dr. Dennis' ICES PEMF seems to be the best out there, with the lowest EM power output and the lowest cost.

To reiterate, MOST PEMF devices are pseudoscience. Some can cost tens of thousands of dollars, compared to this which costs only about $500, and this has the original inventor of PEMF behind it.

Dr. Dennis himself seems to heavily rely on this device to effectively treat his own debilitating back pain.

I've long kept my eye on this device but never bought it because I don't have chronic pain of any kind (mostly).

I'm sorry if this post sounds like a sales pitch or something. I am trying to give a honest assessment about this device from everything I've read. I haven't bought the device myself.

I really recommend reading up on it.

 

[Mary]

I'm all for experimentation and tinkering with off-label and unproven treatments in diseases that don't have established treatment guidelines and aren't necessarily progressive, but you shouldn't be doing that with an organic disease like Spondyloarthritis/IBD.

My sister has rheumatoid arthritis, which is a progressive illness. One of the established treatments is DMARDS - maybe it's the same for spondyloarthritis. Anyways, one of the DMARDS is methotrexate which can have very serious negative effects. She was on it briefly but has managed to stay off of it for a few years now. She's starting to take baking soda and it will be interesting to see how she does.

In any event, the study referenced above about baking soda said that it started to shift macrophages to anti-inflammatory in two weeks:

In the spleen, as well as the blood and kidneys, they found after drinking water with baking soda for two weeks, the population of immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2.

The scientists also saw a shift in other immune cell types, like more regulatory T cells, which generally drive down the immune response and help keep the immune system from attacking our own tissues.

https://medicalxpress.com/news/2018-04-soda-inexpensive-safe-combat-autoimmune.html

I think a short trial of baking soda might show benefits in a surprisingly short time. I'm not suggesting anyone stop their meds, but if I had RA, I would be definitely taking this study to my doctor, and being who I am, I would trial it myself. Actually I started taking baking soda daily about 2 weeks ago because I get sick a lot, I seem to be fighting a chronic sinus infection a majority of the time, I get sick every time I crash, which is quite often. I'm also achy a lot and finally realized I'm acidic probably most of the time and disease and illness seem to thrive in an acidic environment. And the experiment seems to be paying off. I crashed, and did not get sick like I always do. I also added in potassium bicarbonate because baking soda raises my BP and the potassium bicarbonate seems to balance it out. I'm taking 1/2 teaspoon each, together, 2 x a day.

 

[ryan31337]

My sister has rheumatoid arthritis, which is a progressive illness. One of the established treatments is DMARDS - maybe it's the same for spondyloarthritis. Anyways, one of the DMARDS is methotrexate which can have very serious negative effects. She was on it briefly but has managed to stay off of it for a few years now. She's starting to take baking soda and it will be interesting to see how she does.

Conventional DMARDS aren't a first line treatment for SpA, their effectiveness is largely limited to peripheral rather than axial arthritis. For SpA its NSAIDs and then onto biologic treatment, usually anti-TNF alpha, but also some interleukin and most recently JAK inhibitors. Often your body ends up combating the effect eventually, so you have to switch.

I'm sorry to hear about your sister. My partner's mum has quite severe RA that has proved very difficult to treat, she has recently started on a JAK inhibitor and it has given her some relief at last. The added bonus is they are smaller molecules so can be taken in pill form. Best of luck to the both of you with the trial.

Ryan

 

[overtheedge]

Sounds rough, I'm sorry @overtheedge.

Your IBD is a major risk factor for spondyloarthritis. Other red flags you mention include worsening with inactivity, worsening at night, lumbar and neck involvement. There is a lot of crossover and with pre-existing IBD your gastroenterologist should refer you to rheumatology at the first hint of joint involvement.

It's worse with inactivity only if the inactivity involves me putting pressure on the back, i can spend a day avoiding putting pressure on an area and that area will have reduced pain the next day

I will say it's worse when ive been up many hours or have bad sleep, with how hard my sleep is to control im waking up and going to sleep at all hours, so if you mean worse when further from having awoken then definitely but if you mean worse during the nighttime hours then I don't have that though I know a number of people on this board have worsening during nocturnal hours as one of their symptoms. Strange how many symptoms can come with these chronic illnesses.

Interesting you mention Testosterone, my testosterone is low consistently for years now, FSH is also low. BTW I'm male/late twenties

I tried CBD a few months ago for the second time and for the second time i felt immensely good for a week after taking that single dose of the stuff, I would have kept going but i needed to get started on the IBD treatment and didn't wanna wonder which was doing what

TNF-alpha is fine as is ESR and CRP and a number of other inflammatory markers, the IBD hasn't caused any non occult bleeding, only time i notice it is if i eat something spicy or take a supplement that is very acidic like betaine hcl or vitamin C, it causes pain in my lower gut later in the day but other than that the IBD has been rather stealthy


Spine Xray's showed that it bends to the side in my upper spine and my lumbar spine at the points where my body sinks into the mattress, no spine pain before new mattress so i dunno if it's really involved, neck hurts sometimes but not bad at all.

The spine pain goes away if I see the chiropractor a number of times and stays away for a while or at least abates


The back painpain is nonexistant when I'm standing or otherwise not putting pressure on my back
The pain is localized in the cords in my back, the ones that you can sort of push up and down or side to side there under the skin

Several years ago I had knee pain that was pretty bad for a day out of nowhere and made it difficult to move and get around but was gone the next day, this happened two or three times but not recently

I have seen a rhumatologist about CFS 4yrs ago, lots of antibody tests which all came up negative. DIdn't have back pain then though, was out of bed much more then


Forgot to mention that the pain is worse on days where cfs is bad such as days of low sleep or pem, not only is the back pain bad but all pain, for instance, putting my feet on the ground on days of exhaustion the pressure hurts slightly.

Honestly it goes beyond just back pain, if i wear a necklace that area of skin will start to hurt and ill have to shift it around or take it off. Did a sleep apnea test and the pulsox felt like it was gonna crush my finger and the box strapped to my chest felt like it was burning through, really did a number on my health, was much worse for a while after, it's like my skin or muscles have low energy and will drain body energy if pressed upon

Have you ever tried the herb Cats Claw?

did once, didn't do anything for CFS but i didn't have back pain then

 

[ryan31337]

There are a few things in your recount that would continue to make me suspicious, but its a mixed bag and the pain certainly sounds like it has a lot of mechanical attributes. However, SpA can often present like that. I have a number of recurrent mechanical problems from hypermobility and that's all they were ever deemed to be, until things became worse and we started seeing obvious inflammatory problems in other joints. Since being on biologics much of the classic mechanical pain has reduced too, so inflammation was always playing a part and aggravating in some way.

In terms of nocturnal pain: classically you'll be woken in the early hours with inflammatory pain and it won't go away until you get up and move around. It would kick in for me late in the evening too if i'd been sitting, immobile, on the couch for a few hours. This might be skewed a bit though if you're being woken by other issues and not staying still for more than a few hours at a time.

I'm not sure on the definition/diagnosis of your IBD but figures suggest something like 65% or more with AS have sub-clinical IBD, which I guess might fit with your level of symptoms. I too normally wouldn't fit a Crohn's diagnosis but when everything flares i'll temporarily approach Crohn's levels of bowel movements, intense inflammatory fatigue and pass blood.

Mid-twenties is peak SpA on-set age. One in 5 of IBD patients will get enteropathic arthritis (inflammatory arthritis, often in periphery), if you have other risk factors like HLA-B27 the chances of it also affecting the spine goes up. Definitely wouldn't hurt to see a rheumatologist - just try and cherry pick one with an interest in Spondyloarthritis, otherwise you might just get thrown in the Fibromyalgia bin without appropriate investigation, especially considering the other pain issues you have.

Some other classic SpA signs to look out for: swollen, painful fingers (dactylitis), ankle or heel pain (enthesitis), pain between breastbone and ribs (also enthesitis), inflamed eyes (uveitis), nail pitting and skin plaques (psoriasis).

 

[overtheedge]

@ryan31337
Interesting, thank you for the info. This might be a foolish question but are there any specifics in terms of going about cherry picking a Spondyloarthritis doctor? Should I call around and ask specific questions of the doctors office, search online for a local doctor, or look for a specialist from far away who can do this entirely through video conferences since i cant travel? how would you go about doing it? Also, should it be a doctor on Spondyloarthritis specifically or something more broad like inflammatory back pain?

Also had a lot of backpain because of a flu and lay down 90/95 % of the day.
Sorry that you have to go through is.
But i am a stomach sleeper. Can’t sleep on my back.
neckpain from sleeping on stomach i solve by turning my head more to the middle.
Not lay on my ear but the pillow next to my nose. Allmost like on a massagetable with a hole in it.
Maybe some variation with a bodypillow or a pillow under stomache?For a side/stomache/spoon position.
They collect a lot of dust so 2 pillows is better.
Also i put my knees on the floor on something soft.
My upperbody on the matress and pillow to get relief.
But bed has to be high enough for that.
Also a too hard spring matress was a problem.

I used to be a side sleeper but due to back and side pain I'm now a stomach sleeper as well.
I've found that slightly propping up my side on the side my head is facing helps, probably because the body spine and neck spine are more aligned and don't have to twist as much and so are less strained

 

[ryan31337]

@ryan31337
Interesting, thank you for the info. This might be a foolish question but are there any specifics in terms of going about cherry picking a Spondyloarthritis doctor?

I would ask your gastroenterologist for a recommendation, they'll certainly have awareness of the overlap with IBD. Failing that, a GP/primary care doc might be able to help if you tell them what you're looking for.

If you don't have confidence in either of those, I would search online for Rheumatologists locally that have a stated interest in IBP or SpA. The one I found was the lead for an SpA clinic in a major orthopedic hospital and she had a background in research (PhD), so I figured she wouldn't be painting by numbers like some do.

 

[panckage]

Is the back pain from deconditioning? If so I've found breathing exercises (specifically Wim hof's) has improved my lying posture and consequently back pain