Old 06-25-2017, 08:26 AM #1 (permalink)
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Default Knees

I have been trying to exercise more after months ..infact the last 2 years very inactive due to huge flare/downturn.

So walking round my large living room in circuits or around my garden building up slowly from a few minutes to eventually 10 15 or 20 minutes a few times a day depending on how my body is reacting making sure my knees dont get to the point of high pain or seizing.

I did this last NovemI ber trying to rebuild my stamina and leg strength as my legs feet and knees are often so painful i can barely stand or get around the house and is why i ended up so inactive in the first place as it also affects my upper body the same.

Then after about 2 or 3 weeks thinking I am progressing suddenly bam my knees are so locked up im in so much pain.

The tendons top and bottom and on the inside of the knee joint are so rigid and painful ..at least thats what i think it is and the pain goes right through the centre and down my shins and up my thighs as well as the inside edge of the knee joint itself which is so seized.

So now i have been stuck like this for over a week with no improvement..ive tried heat and ice and rest and a little gentle movement.

I am at a loss as how to move forward as this happens all over my body...i might use my arms carefully and keep the pain manageable while im doing them bam my whole upper body seizes and can only rest with hot water bottles and i never know how long before i get a couple of hours where its tolerable pain levels....it can be weeks.

I used to manage this illness so well with pacing and resting but my old formula just doesnt work anymore...and i am becoming deconditioned.

Any tips or similar experiences welcome.
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Old 06-25-2017, 08:48 AM #2 (permalink)
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Default Re: Knees

diamond, reading your post I am wondering if possibly chiropractic care might help you. It is possible that you are so out of alignment that whatever you do, even carefully, is sending you into a flare.

Another thing, perhaps, would be acupuncture.

Although much is not understood about fibro and how it works, what you describe sounds as though it may have origins in the body that could be corrected in order to allow you to move forward.....slowly and carefully.....with getting some exercise.

Although I have similar responses to exercise at times, it is not nearly as severe or long lasting as yours. which is why I am wondering if those treatments might be worth checking out.

I know that for me if I am experiencing something that goes on for weeks at a time often an adjustment from my very good chiropractor will make all the difference. If you are out of alignment, you can't get better until that is corrected.

well, that's just my 2 cents worth.
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Old 06-25-2017, 09:41 AM #3 (permalink)
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Default Re: Knees

Thanks sunkacola i appreciate your train of thinking...the thing is my fibro used to do this right from the start..just recovery was quicker and it happened less often to this extreme.

....it happens through ALL my joints if they are used very much at all ..sometimes i can feel it building and then times when there is not necessarily any warning... i just wake up like it and then it sticks...so i never know if its anything ive done or just random.

So my shoulders and shoulder blades, elbows and wrists hips feet ribs etc can all react the same....i cant imagine my whole body needs adjusting and i did have physio on my worst knee and foot and shoulder and arm before my diagnosis of fibro as it suddenly started doing this after i fell off my back door step and broke my foot way back 10 years ago.

The physiotherapy which extremely gentle was a disaster i would go in walking and come out and be hobbling later that day hardly able to weight bear on my knee and foot and my whole left side upper body seized up for about 3 weeks from just lifting my arm above my head about 6 times ..a few gentle swinging rotations and some massage.

After this i was sent for xrays ultra sounds and MRI's and nothing could be found and over a few months the same pattern spread through out my whole body of being intolerant to any significant exercise.

So i found a formula of gentle walking about 40 minutes a few days a week when i could and only carry very low weight things and doing my house work slowly as in say 20 minutes at a time limiting how vigourously i used all my limbs.

I had to stop having baths as i would get in okish and get out unable to weight bear on my knees from putting my body weight through them at an awkward angle.

I have Never knelt on the floor since then or able to do sqauts and have to walk keeping everything straight if that makes sense....or i would pay by being in this seized up severe pain straight away...or maybe a few hours later.

Then a couple of years ago i had emotional trauma and it all went more haywire and i had so much pain all the time my routine went out the window....and over time i know my muscles have weakened on top of how things were already pretty tough.

I really appreciate your thoughts but i dont think i could risk chiro when my whole body reacts like this and even the physio said she couldn't treat me anymore as she had never known a body to react like it to such gentle movements.

I feel so trapped as i keep trying....sitting on my bottom hurts... leaning back in a soft chair hurts my back...lol laying in bed hurts! Crazy crazy body.

Years like this is sooo depressing and i promise i have tried and tried.

Any other thoughts welcome..or anyone else have a body that does anything like this? if so what causes yours to do it and how long to recover.

I have lost my old bearings as to what i can achieve....and welcome other peoples stories.

Just to add i was in good physical shape when i got fibro like this suddenly and had been a very active person..and not overweight..about 124 lbs and 5 feet 5 inches.

Thanks for listening.x

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Old 06-25-2017, 02:27 PM #4 (permalink)
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Default Re: Knees

Sorry my second post is repeating much of what's in the first.. a fibro fog moment over explaining!
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Old 06-25-2017, 06:37 PM #5 (permalink)
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Default Re: Knees

Hi Diamond,

I hate to admit it,but my Fibro was severe when I was diagnosed.It came in very fast while I just was finishing college again.A couple of years ago I would have maybe 2 or 3 good days where I would have a burst on energy every other day.Just lately I haven't had that.

So I understand Diamond. It seems a lot of days I'm severely weak and I get short of breath pretty bad on exertion.I don't know if u get short of breath too.Its gotten me down lately and I've always been a positive person.Im trying hard to think that this will pass.And my couple of energetic days come back.
I've been getting bad pains in my legs and feet this past month.Where I'm limping and having trouble walking long distances.

This disease is a hard thing to live with but when the good days come it's like u hit the lotto lol,not.
Have been trying to win lotto for years but I haven't given up.I like the scratch offs too.
Something I like to get once in awhile and it cheers me up.I think I'll get some tommorow


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Old 06-26-2017, 03:58 AM #6 (permalink)
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Default Re: Knees

Thanks for replying Sagey...i think by the few replies most people don't get things this bad....i'm pleased for them but frustrated for us few most severely affected..i feel like a real complainer as most people seem to find a way to exercise and stay more active some of the time.

I'm not ready for life to pass me by even though i am in my 50's. Do you have relief with any particular medications Sagey since you have become worse?

If i remember correctly you are hoping to move to Carolina...i really hope this helps your fibro return to a few better days each week...lol you are right, good days are like winning the lottery....in fact sooo much better than any amount of money!
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Old 06-26-2017, 05:46 AM #7 (permalink)
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Default Re: Knees

Diamond, I'm really liking the idea of a chiropractic assessment for you. No major 'cracking', just a gentle adjustment to get everything where it should be. As sunkacola said, maybe that or acupuncture. Both work on freeing up nerves or stimulating nerves for the body to heal itself.....you know all this already.

I'm sorry you are still suffering....my heart goes out to you. Are things improving on the home front? I know your weight is good but are you eating a low inflammation type diet.....simple foods, low caffeine, alcohol etc?

I'll keep thinking......XO
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Old 06-26-2017, 09:08 AM #8 (permalink)
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Default Re: Knees

Thanks peaceandquiet..yes i do eat very healthy most of the time...no caffeine no alcohol i dont like it....plain simple fresh foods, lots of fresh veggies, and fruit.. i'm vegetarian so healthy sources of protein...lots of water.

Homewise things are ok..maybe not how they used to be mainly because health affects everything and everyone close to you.

Thanks for chipping in i really appreciate it. Maybe i will research chiros and acupuncture . Have you had either of these yourself?
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Old 06-26-2017, 11:37 AM #9 (permalink)
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Default Re: Knees

Diamond,

I'm not ready to give up either.I will continue to try different things.Im not sure if Cymbalta was better for me.Im on Savella right now,so will see.I did go off Gabapentin because I wanted to give my body a break.I might have to tweek my meds again to get that balance again.

Our bodies change over the years and the meds have to be adjusted a little for our symptoms.My daughter is getting married now,so I have a lot going on again.So I have to get all that done before I can think about moving.But South Carolina will be the place.



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Old 06-26-2017, 02:35 PM #10 (permalink)
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Default Re: Knees

Thanks Sagey wow another wedding how exciting...you are doing brilliantly with all that to help with. Does the savella help you sleep ..we call it milnacipran in the UK and ive never heard of it for fibro pain here.

Is it one of the group of antidepressants that helps calm and relax as opposed to giving energy type...lol i could do with both but right now i need help with pain the most..so calming the system and help with deeper sleep.

I will accept less energy if i could get some better pain relief.

How long have you been taking it and did you find it took very long before you felt it help? Side affects?

Sorry so many questions. I appreciate any information although i know we are all different in how we respond.
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Old 06-26-2017, 07:33 PM #11 (permalink)
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Default Re: Knees

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Thanks peaceandquiet..yes i do eat very healthy most of the time...no caffeine no alcohol i dont like it....plain simple fresh foods, lots of fresh veggies, and fruit.. i'm vegetarian so healthy sources of protein...lots of water.

Homewise things are ok..maybe not how they used to be mainly because health affects everything and everyone close to you.

Thanks for chipping in i really appreciate it. Maybe i will research chiros and acupuncture . Have you had either of these yourself?

Hi again,

Yes, I've tried both in the distant past. Chiro for a back injury and my scoliosis.....acupuncture for for my shoulder and once for a migraine. I've since had a few trips back to the chiropractor for adjustments when my body just doesn't feel right but not since the fibro diagnosis. I would like to try it again now though. I've also had good work done years ago by an osteopath....an even gentler approach, but the after pain was pretty bad. There was a lot of stretching which felt really good at the time.

It's best if you have a good rapport with the person doing the treatment and that you relax and put your trust in them if you can. If you get a bad feeling about it, don't continue though, just leave. Trust your instincts. X
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Old 06-27-2017, 10:43 PM #12 (permalink)
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Hi Diamond ,

I was on Cymbalta And it was working ok but I thought I could get something that would help better.So I changed to Savella to help with pain and I'm not sure if there's much of a difference in the two meds.But it might be hard for me because I'm also on Subuxone for pain.

When I was in North Carolina they gave me Subuxone for pain it's legal there to use for pain control.Although it is also used for addiction it helps keep the blood level steady and when u forget to take it you don't feel bad because it has s long half life..

It's the first medication that has ever controlled my pain.It keeps your body feel stable and pain free , depending on the dose .
I'm no longer in nc so I might have to switch if they can't continue to give me this here.

I also take Ambien for sleep every night and it works great! For me .I sleep pretty much all night but may wake up once but I get a sound sleep.
The Ambien is controlled substance so the dr would have to give u a script.But that's the only med for sleep that works for me.


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Old 06-28-2017, 10:44 AM #13 (permalink)
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Default Re: Knees

Thanks Sagey ive never heard of subuxone and just googled it. Im a little confused as its says its not used for pain and like you kindly explained its used for opiate addiction...so i am guessing its prescribed by some docs off label for pain.

I doubt there is anything like it in the UK thats legal?

We have something called LDN low dose naltrexone but its not allowed for fibromyalgia and is also for addiction although trials have shown very low doses help MS and fibro pain.

So is the savella for depression or to help pain too? I hope thats not too personal and no need to answer if you dont wish.

Did it take lots of trial and error to get a package of meds that helped you?

Glad the ambien helps you sleep.

Thanks.
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Old 06-28-2017, 12:40 PM #14 (permalink)
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Default Re: Knees

Hi Diamond,

I use the Savella for the pain relief properties.They believe it does help with pain control.The Cymbalta too.Lyrica is an anticonvulsant but is also used off label for pain relief.
Sometimes a combination of them helps.It all depends on the person.And it never completely takes all the pain away,we know that.Thats why a lot of us supplement with another pain control med.Whatever works!

I found this small paragraph that explains it in short..

The pain relieving of antidepressants are not very well understood. They may increase neurotransmitters, or chemical messengers, in the brain and spinal cord that decrease pain signals. Antidepressant pain-relieving effects are not immediate and may take several weeks to provide maximum benefit. Many people report moderate pain relief from antidepressants. Anti-seizure medications can be added to antidepressants if pain relief is incomplete.

Hopefully soon they can create one medication that has pain relief properties and helps with severe fatigue it causes.I pray everyday.


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Old 06-28-2017, 12:49 PM #15 (permalink)
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Default Re: Knees

Hi Diamond,

It does take awhile to get the meds that work for u.Sometimes u can go for several years and be stable with the meds.I once was on Fentanyl patches and that really helped the pain ,but is a very strong narcotic and I felt drugged ,so I changed. You just have to keep trying different ones until u find the right combination.



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