Fibro The fun filled world of fibro

[Mee]

When I first started taking it, it affected my bowels. I almost stopped taking it because since I already have IBS-D, I didn't need the aggravation but over time and after I started more diligently taking a psyllium fiber supplement daily (as I should with IBS-D, anyway) the problem went away.

Ah- just saw this- I have these sort of symptoms but can not tolerate psyllium fibre - it really aggravates symptoms for me :(. I kinda feel better knowing it really does work for some . Wish I was one !

I find I tolerate fruit and vegetables better when cooked ( but love them raw ) .

My gastroenterologist described ibs as being fibro of the gut when I was under investigation - it always struck me as an interesting comparison but I get it more now .

 

[Lionheart]

I tried Lyrica and it made my legs swell up. Gabapentin had no effect on my pain at all, so I discontinued them both. I am currently not on any medication for fibro. I even had to stop taking arthritis medication because of a possible interaction with blood thinner medicine. I use a heating pad and when it is really bad I stay in bed. It is not much help, but with COPD, and CFS, I can barely even exercise. I do manage to get out and walk a short distance at least once per week. And when walking, I have spinal stenosis pain....truthfully, I have so much going on with my health that it is difficult to separate the illnesses one from the other. I say that only partially in jest as it seems to be true for me.

My experience has been that fibro is triggered by cold and sitting or standing in one position too long so that I have to have a break to stretch or rest. The pain, once it starts continues to the point of "I can't stand it, it's a 10." and I will hurt all over. I need to go back and read this thread in more detail and get some tips and suggestions for dealing with fibro pain.

 

[blackemerald1]

gabapentin for their fibro (or other neuropathic pain)

Have and occasionally will take it.

How concerned should I be about the side effects?

Very. A couple of issues. It's now on the 'watch' list in some Australian States because after the health authorities so successfully demonised ALL opiate medications for pain they set their sites on this. There has been news & health warnings regarding it's use. I guess the druggies have got to go somewhere right?

The side effects can and will vary depending on the person (of course) and the dosage. Higher dosages may make side-effects that are manageable at lower doses, less easy to deal with. Gut issues, bowel issues and suicide/emotional relgulation issues are common. Including but not limited to:

1. agressive outbursts (new or existing)
2. depression (new or existing)
3.anxiety (new or existing)

and several other emotional/mental health and physical well being effects like the usual suspects - weight gain/loss depending on other factors.

Having said that: It is very effective pain relief medication.

Since I know you already take Seroquel I'd consult very, very closely with your doctor on this because the sedation effects along with Seroquel may be very difficult to manage and actually be detrimental to your whole of health.

Withdrawing off it is a bitch - so be aware it may not easily be tossed. Be very wary of taking it long term. Our brains gets attached to this particular drug quite happily.

Does it help?

As always - I'd say the less medication one takes the better. Some people say no - it doesn't.

But it can help - yes.

 

[Mee]

I didn’t know whether to start a thread on this or post here - obviously I have opted for here.

I really am fighting to maintain and hopefully increase mobility right now and while I am not sure which of my issues is at play I know that fibro and fatigue aren’t helping.

I have a stool in the kitchen for cooking and food prep but it’s really uncomfortable and not very safe- do I am just not using it - and only managing short stints standing .

I wondered if anyone has any experience with wheeled saddle stools? My feeling was that if my feet can still reach the floor and my pelvis is in a sort of upright position and my core muscles engaged I am gently using some endurance but most of it - so I can increase my stamina gently- but if not maybe at least be able to cook whole meals ?

 

[AngelKeeperJ]

I think wheels are a good idea but you need plenty of support and balance? My BFF uses a walker with wheels and a seat to get around the kitchen. It locks, which I think is important? You can stand as needed but have a place to sit if you need it right away

 

[AngelKeeperJ]

P.S. I have balance issues due to neuropathy in my feet/legs and would tip or fall over if I tried to use anything with wheels.

 

[Freida]

so my anxiety is kicking my ass. I'm taking atarax three times a day and doing some natropathic stuff but it's not helping. My biggest challenge is getting my pulse rate and bp down. I keep thinking I'm getting on top of it but then I looked at my diary and realized it's been going on for about 6 months.

I have a meet with my doc next month and I'm wondering about anti anxiety meds. I've heard pros and cons about gabapentin - anyone tried anything else? I figured I would ask here since fibro seems to make everything more complicated.

 

[RussellSue]

I wondered if anyone has any experience with wheeled saddle stools?

Now I am going to feel like one of those oblivious Amazon question answerers by saying, why no, I don't have an answer but I have something to say, anyway. Sorry.

I often use my husband's wheeled office stool for kitchen stuff. It has a height adjustment. I raise it as high as possible and maneuver it around with my feet. Most of the time, I am half-standing but can always sit back down if I must. I have to use a coccyx cushion on it and it helps make it a little higher.

 

[AngelKeeperJ]

I found Ashwaghanda really helps me with anxiety. It's an adaptogen which as I understand it, is something that boosts up stress response? I'm bad at putting it into words but I know it helps me. I found it while researching herbs that help with opioid withdrawal.

I noticed a difference at about the 3-4 day point taking it twice a day. I have stopped it and that physical anxious feeling came back. It's not expensive

 

[Freida]

@AngelkeeperJ I've seen that advertised just recently I'll check into it!

 

[Mee]

Now I am going to feel like one of those oblivious Amazon question answerers by saying, why no, I don't have an answer but I have something to say, anyway. Sorry.

I love that - . and I think what you had to say was useful - thank you - And thanks @AngelkeeperJ too.

part of what I am working with is the nature of my old farm house. It’s got some old doors which my wheelchair doesn’t fit through. Some days I can walk absolutely fine - It’s mainly ‘stamina’. For example - I had a dodgy week with some low mobility days but just now I guess I walked 500 metres with no walking aid at a fairly normal walking pace ( in adverse weather which is a little tiring too ). But I am now exhausted and lying down for a bit, before getting back up into a more decent day time sitting position . Yesterday my left heel was ‘pinging’ very painfully and my right knee is recovering from one of its incidents of playing up ( very degenerated from an old riding accident and my weight is impacting on that ) so today and yesterday are different pictures - I would love to be able to build up stamina but - pushing through the days I am not as pain restricted

the reason I was thinking of the stool was to fit in narrow spaces and gently let me have my feet on the ground but my weight supported. My main concern is any knee pressure but if my weight is supported it should be

 

[RussellSue]

the reason I was thinking of the stool was to fit in narrow spaces and gently let me have my feet on the ground but my weight supported. My main concern is any knee pressure but if my weight is supported it should be

My issue is my hips. I walk fine most of the time - not even limping much, anymore, but I cannot stand in one place for more than a minute or two before I have to start repositioning myself. I used to own a wheelchair but found it difficult to move around in a small kitchen and it was too short for me to do much work, especially dishes. I had some issues with small doorways, too.

I have not actually had the opportunity to sit on a saddle stool but the shape makes me concerned about my tilted tailbone. I can't use a regular bike seat because I get blisters and I use coccyx cushions at my desk and in the car to keep pressure off of it. Every saddle stool I have looked at looks like there would be pressure right where I don't need it. Though, I think the rings they often have at the bottom could be a very helpful place rest the feet when not moving around. Mine does not have a ring like that. I rest my feet on the legs but I think the options a ring at the bottom would give might make it more comfortable since I am pretty limited on where I can put my feet. This stool also has a back which I do appreciate because it helps keep my cushion from falling off and I can lean back on it if I get tired.

My motto is, if you think it will help, buy it! Life is too short to feel too limited in what you can do, especially if some relatively inexpensive item can improve your situation. It sounds like you are probably on the right track with this stool idea to me.

Best of luck!