Fibro & Severe Stiffness.: Hello all... - Fibromyalgia Acti...

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Fibro & Severe Stiffness.

catcalling profile image
31 Replies

Hello all.

So it's been a while since I posted last.

Many of you were so incredibly helpful and knowledgeable on many questions about fibro.

I had never realised or put the two together when it came down to severe stiffness that some people experienced this as a symptom of fibro.

Can anybody explain why this happens and if there is anything out there that anyone has found useful that helps relieve this side of it.

I'm at the stage where I really don't know whats worse, the pain associated with fibro or the unwillingness I have to rest simply because I can't bear how stiff I get after just a few minutes of sitting down.

Car journeys are a nightmare..unless I'm driving which seems rather odd.

If anyone has any advice/suggestions I would be eternally grateful x

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catcalling
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31 Replies
Bonny1234 profile image
Bonny1234

Hi Cat I once suffered from this also and did think it was stiffness associated with fibo, especially in my legs I had my routine app with my neurologist and explained to him what I was feeling he went through my medications resulting in him stopping a blood pressure med and changing it , after a few days the stiffness was gone , what he explained was this med causes a build of fluid and in turn this build up causes a tightness in the skin ( although I had no swelling) This tightness can feel like stiffness especially in the legs, thankfully he was right and now I am stiffness free , currently I am meds free from fibo and feeling great.

Hopefully this helps.

Debbie

Greyt profile image
Greyt in reply to Bonny1234

Hi that’s interesting . I have severe stiffness especially first thing in the morning . My bp medication is Indapamide .

Bonny1234 profile image
Bonny1234 in reply to Greyt

Hi again Thats the one I was on , 10mg maybe worth speaking with your GP ?

Greyt profile image
Greyt in reply to Bonny1234

Also I notice you have a neurologist .. is that particularly for your fibromyalgia?

I saw a rheumatologist once and ongoing gp but never been referred to a neurologist?

flashyman profile image
flashyman in reply to Greyt

Hi. I was on Indepamide for about 10years for bp and it eventually took out all the salts in my blood. I had to have a calcium and magnesium infussion because it was so low. Apparently dangerously low. I was in hospital 2 days on a drip. They said it was that tablet that caused it. Got an emergency phone call from my gp to stop taking them. Funny thing is . Shes never replaced it with something else. Just said carry on taking Losartan.

Hope you feel better soon.

catcalling profile image
catcalling in reply to Bonny1234

Hiya Debbie.

Thankyou so much for taking the time to reply 😊.

It's great to hear you are currently meds free and have no more stiffness, long that may continue.

I don't take meds for my BP, currently I'm on Omeprazole, Gabapentin, Codeine, Promethazine Hydrochloride ( thats to help me sleep).

I've been trying to get Gabapentin changed as the weight gain I've experienced and the failure to try and lose it is demoralising, it's almost impossible to even speak to a doc at my surgery.🙄.

That said I had a very interesting chat with a consultant this week as I've just been diagnosed with sleep apnea so hes going to write to my docs and request a pain management and meds review so hopefully they will come up with something else.

I'm going onto a keto plan so will see if a varied combination of many different things will help with all associated pains,😀

Will keep you posted x

Bonny1234 profile image
Bonny1234 in reply to catcalling

Hopefully you get results from a medication review , I was once on all if them and to be honest I'm sure a big part of my fibo symptoms was stress related , my job was a massive factor to my stress I have since changed jobs and stopped taking meds all together I honestly feel so much better , I'm still in pain but have found ways to manage it , I hope you feel better soon x

Zeek2021 profile image
Zeek2021 in reply to catcalling

I did keto and lost four stone . Did touch the fibromyalgia for me . I started reintroducing carbs as got fed up feeling I was so restricted in what to eat , vegetarian too. I'm diabetic reason for doing it. It unfortunately made me become more resident to glucose and sugars shot up to higher than prior and now on different diabetic medication .Pain medication is making my weight go back up so I feel more demoralising.

That's my experience hope you have more luck

Zeek2021 profile image
Zeek2021 in reply to Zeek2021

Meant to say didn't touch my fibromyalger pain .. and felt really cold which increased my pain

Gigiruth profile image
Gigiruth

Hi CatcallingSorry to hear you have such constant stiffness. I have had much stiffness for years with fibro.

I have operated the use it or loose it approach. This has been both helpful and not helpful.

I use a physio dvd for another condition and this helps,lots of stretching..Epsom salt baths and whatever walking I can if I can. Once buts of me gets "stuck" I need a massage,sports style. It is sore but helps. I ache so much.

I use chinese massage balls for my hands. Some days I can do it some days impossible.

Relaxation is very important. I am interested that you get stiff as a driver but not a passenger?What is different? Type of car or stress? Do you tense your body when you drive.

Everyone is different with fibro and sometimes it is not possible to move at all.

Each their own path with fibro,I hope you find things that help.

Take care

Gigi

catcalling profile image
catcalling in reply to Gigiruth

Hiya Gigi.

Thankyou for taking the time to reply 🙂.

I probably didn't make myself very clear, I don't get as stiff when i'm driving as I do when i'm a passenger but I guess thats because I'm moving in some way.

I know what you mean about a hot bath or shower, it does relieve it while i'm in the bath or shower but returns instantly once i'm out.

I've a dog who I walk 3 times a day, I've a treadmill that I try and use regulary, I work part time, I'm constantly on the go, but thats my dilemma, I will push myself to the absolute max simply because I have this sort of fear that if I stop all thats going to happen is this stiffness is whats coming next 😐.

It seems I'm dammed if I do and dammed if I don't. x

Turquoisesummer profile image
Turquoisesummer in reply to catcalling

Reading this, I was the same, in regards to pushing myself to the max. I've know learnt at times I need to stop, relax and focus on my breathing or consciously relaxing (yoga nidra helps immensely with this). Sometimes overdoing it causes almost as much stiffness as doing nothing.💖

Zeek2021 profile image
Zeek2021 in reply to Gigiruth

I suffer extreme stiffness and driving a no no . As a passenger I have to change position and stop every so often. Hit water bottles permanently strapped to my back 😌

Cat00 profile image
Cat00

I read a medical paper on Pubmed years ago that said there was evidence that muscles in fibromyalgia patients show signs of hypoxia and it is likely to cause pain in resting muscles of fibromyalgia patients. One paper said it is likely there is a "disturbed microcirculation" and "reduced content of high energy phosphates" within the muscle (I have no idea what that means), another paper said hypoxia in fibromyalgia patient muscle could actually be a result of too much oxygen being given to the muscles, which I don't understand at all bc I thought hypoxia was the lack of oxygen?Anyway I've always put my stiffness down to hypoxia, vigorous exercise is what helps my muscle stiffness, for a while at least. I presume it helps because it causes changes in microcirculation?

catcalling profile image
catcalling in reply to Cat00

Hiya Cat, thankyou for taking time to reply 🙂.

Your reply is a bit beyond me, but I understand about exercise and I do try and do as much as I can, but the stiffness resumes instantly no matter what I seem to do 😔x

Cat00 profile image
Cat00 in reply to catcalling

Well maybe if "microcirculation" is the problem then anything that gets things moving would be good? Maybe if exercise isn't any good, compression tights might help, or hand held massage device?

Personally I can't bear being massaged by another actual person, too painful, but you could try a foam roller, then you could do it at your own pace?

Alecinthesun profile image
Alecinthesun in reply to Cat00

Hi, I have been researching this also, according to the journal papers that I read, the supplement ATP reduces muscle stiffness. Please don't ask me which ones, reading distracts my mind from pain, so I read hundreds of papers on different subjects, I was doing a PhD so I was accessing journals online. I wanted to take the supplement and test it out on myself. I got ill and I am currently suffering from vertigo (I had an inner ear infection since Christmas) so I haven't been able to do gym work. I wanted to use ATP with exercise to test it. I do find Magnesium oil works really well for reducing muscle stiffness. I use a fascia roller every morning and when in the gym, I rest my legs on the vibration plate which stimulates microcirculation. I am really interested in microcirculation and phosphates and just this morning I read about the Guaifenesin Protocol. I have been using Guaifenesin for reducing the sinus infection and noticed a reduction in my muscle stiffness, which got me curious. There are no firm studies on this, I have been taking Guaifenesin mainly for my sinuses but I did find it interesting.

Cat00 profile image
Cat00 in reply to Alecinthesun

Ooh that's interesting I am currently ill with a cold so I've only managed to swim, I've had it for a week but it seems to be getting worse rather than better. I have a very irritating unproductive cough which is making it very hard to sleep so Guaifenesin might be useful for me also.I'm particularly annoyed as I've just manged to start swimming again after my HIT classes. I'm hypermobile and read that with hypermobility you have worse blood pooling after exercise than nonhypermobile people. Apparently the fix for this blood pooling is have an active cooldown, hence the swimming after the cardio, although to be fair I just like swimming. Maybe this blood pooling could be a result of malfunctioning microcirculation? It's partly why I wear compression leggings at the gym, although I know the data on them is poor, anything that makes me less likely to get injured is worth a try.

I too read such things, particularly first thing in the morning when I am often in a lot of pain, often its just the abstracts because you have to pay to read the full thing. I don't have much time either and most likely wouldn't understand most of it!

Hi catcalling.

I'm sorry for what you are going through.

For my chronic pain (not stiffness) I go to my local public heated pool. Wonder if that may help?

On the point of stiffness from someone who suffers it, my mother who has rheumatoid and is unable to be medicated (no steroids, methotrexate), will stiffen up badly after eating fish or meat.

Have you noticed your severe stiffness occurring after eating/drinking anything in particular?

catcalling profile image
catcalling in reply to

Hiya Wunderkid, Thankyou for taking time to reply. 🙂.

I did used to go swimming so maybe I could look into this again, time factors can make it awkward, but maybe not impossible.

Interesting on the food side of things though.

I know it's quite common for people with rheumatoid to avoid certain foods and tomatoes apparently is a big one, I'm unaware of the meat/fish one.

I'm currently on a kind of Keto/ Mediterranean diet as I've cut out carbs to see if it makes any different ( I don't have an allergy against carbs but I do know I've a slight intolerance).

I guess its just trial and error until I find something that works.😁

I hope you enjoy your weekend x

Loobielu profile image
Loobielu

Urgh I'm exactly the same 😫. As soon as I stop the pain and stiffness ramps up. So I'm restless all day and I get so tired 😩. I just cannot find the balance 😏. Nights are the worse, the pain in turning over! Great question, I look forward to the answers! X

catcalling profile image
catcalling in reply to Loobielu

Hey Loobielu.

Thankyou for taking the time to reply🙂.

So sorry to hear you are going through the same thing as I'm experiencing.

Hopefully we may get some answers that could improve what we are experiencing.😁.

Keep fighting it, it can only get better if we all stay positive x

Turquoisesummer profile image
Turquoisesummer in reply to Loobielu

Hi Loobielu, have you tried heat (hot bath or shower/sauna (amazing!)/heat packs (personally I couldn't survive without a sauna)), stretching, yoga/pilates (yoga, preferably), yoga nidra (so helpful- teaches us to relax consciously which I find I need as my mucsles seem to tense and stay tense all the time😑 this will actually put me to sleep which is crazy since I'm so tense my eyes don't even close when I relax🥲😅), and just movement in general, swimming is great as it takes pressure off the body, even if you can only float for a few minutes between resting... Hope this can help! Take care, God bless

Loobielu profile image
Loobielu in reply to Turquoisesummer

Hi Turquoisesummer, many thanks for your message, very kind and some great advice in there. Heat is definitely something I rely on and I plan to conquer the mindfulness stuff after we move house. Got to keep trying hey. Take care too x

UltimatelyMe profile image
UltimatelyMe

Hi, I am sorry to hear about your pain. My legs are incredibly stiff and have been getting worse. Really painful and I sit with hot water bottles on my lap constantly! I do stretch otherwise I would stop being able to move. My doctor has suggested medication but I am loathed to go down that route as I am meds free after a long time and feel better for it in myself (more energy). I swim which is the only exercise I can do without too much pain and make myself walk 3000 steps a day which is painful. But , yes, it is hard and each day is a battle. A big part of me wants to crawl into bed and give up…

I can’t afford massages unfortunately but do dream about having one!

Definitely heat. I rarely have heating in due to cost (I now work v part time hours which works better for me) but am a fantastic example of heating the person and not the room! An Eskimo 😊. Definitely warmth helps ease the muscles.

Good luck. Keep going… it is still a beautiful world 🌎

catcalling profile image
catcalling in reply to UltimatelyMe

Hey Untimately Me.

Thankyou so much for your inspirational reply 🙂.

Well done on being meds free, that is great to hear.

I've been looking at PNF stretches and will definately be giving that a go.

I agree totally about keeping warm etc, I don't have much trouble staying warm as I don't really stop 😂.

I'm going to try the various suggestions that people have kindly put up.

I've tried going meds free but unfortunately I could't function so I'm still on them, just trying to change to something else that would hopefully suit me better.

Here's hoping for a great weekend x

Lunasmum profile image
Lunasmum

Hi catcalling,my muscles are so tight all the time it can be difficult to rest. when you move again it's agony all over again. my physiotherapy recommended guided relaxation on YouTube. she said if you are holding, holding, holding all the time your muscles don't get a chance to properly relax... progressive muscle relaxation helps me. have a look and see if you can find something to help you.

Turquoisesummer profile image
Turquoisesummer

Hi! I definitely have known stiffness as a symptom of fibro since I never had this until fibro..and it is with me day by day now lol..but.. to keep it short due to brain fog🥲 the best things I have found to help reduce stiffness, even before I was diagnosed (and hopefully this can help you! 😊💕): stretching, heat (eg sauna- soo helpful, also for pain! Or hot baths/showers/hydrotherapy pools, even sunshine)- also heat before and/or during stretching works soo well (the hotter the better)!- this is most effective incorporated once or twice daily (or as often as you feel you need), movement- as much as you can handle without causing yourself too much pain for coming days (this takes a but if experimenting and I haven't quite worked it out for myself yet after 5 years of fibro, but I suspect there are other culprits such as stress and possibly diet) however the days I move the least the more pain I have that day and for days to come (and I know how difficult moving can be woth fatigue and pain but it dies help with stiffness). I think I better leave it here before my foggy brain talks nonsense🙂 I'm sorry you're going through this 💗 one last thought in reply to your post, I'm not sure why it happens, but I remember before I was diagnosed and when my symptoms first began affecting my life that I would lay down to sleep and think, "huh, that's weird why won't my neck muscles relax and let my head lay fully on my pillow?" It was like my muscles started to become stuck in a state of tension and wouldn't involuntarily relax. I don't know if that's the situation for everyone woth fibro, but ever since it has become that way for my whole body, as if my mucsles forgot how to relax, but something I have found helpful for this is yoga nidra. There are many videos online which may be helpful! It teaches us to relax our mucsles which may be holding tension. I find it helpful before sleep (my eyes wont relax and close without this, lol) and also in the morning when I wake up stiff and achey.. I found a 12 minute video on youtube that's just enough to relax my mucsles enough to get out of bed in the morning.. Just search "yoga nidra" and see what works for you. I hope some of this helps! And I'm sorry that you're experiencing this, it's awful, but we're all here for you 💓 God bless!!💛

Julesmoon profile image
Julesmoon in reply to Turquoisesummer

thank u I am defo going to try the yoga. Also I Defo agree on saunas and heat :) but it’s all so temporary :(

My gp prescribed me Baclofen as it's a muscle relaxant. I suffered badly following two heart attacks when they put me on statins. The pain and stiffness was awful

Julesmoon profile image
Julesmoon

Omg I’m with u here the sniffness is unbearable for me at the minute. I cannot move in the evenings laying watching tv is extremely painful I can’t sleep or get comfy I’m at the end of my tether :( also would love some advice. Currently use tiger balm hot water bottles deep heat and zapain which isn’t helping much lately :( this is awful isn’t it :(

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