Hi all, sorry I have not been around for a while, but not been good the last months. We finally moved from Malvern and now are in Cirencester-second move in 7 months! I was hoping that after we had settled back down would start to feel a bit better, but no. My back is much worse and all the pains are worse, particularly in the right and left sides, although usually the right side is worse. My new doctor said she thought it might be a trapped nerve, but with everything getting worse, I don’t think so. It also seems to be making my stomach problems worse as well, so have no idea what to do. I have tried so many things to help, but nothing does. Waiting for a phone call from another doctor I have never seen as mine is fully booked for 4 weeks! I doubt he will have any new ideas about anything, that’s the way it’s been going. I can’t even go for a 5 minute walk without being in mega pain for ages after. Rant over. SueT.
Hello Sue! Welcome back! Sorry to hear that your pain isn’t improving. It’s amazing how our lives revolve 100% around our pain. I’ve been in a bad flare myself. Take care Sue and it’s really good hearing from you.
Thanks for the reply, have spoken to a doctor now but have to wait another 2 weeks to go see my doctor to see what if anything they can/will do. Is it a ‘flare’? If it is, been going for a year or so and just getting worse all the time, especially on the right side. SueT.
Hi Sue, hello again! Very sorry to hear there’s no improvements. In my case I’d say I’ve been in a full flare for over 2 years (whilst my new condition, MCAS, due to the jabs is even more debilitating), so yes I’d think it can be a long-term flare you’re in - if it matters.
If you like please share what the many things you have tried are, since you seem to be looking for further ideas and not getting them from docs. I’m not surprised as none of all my help comes from docs - it was friends, good “physios”, forums, websites, studies and my own ideas… Docs just helped for a few non-fibro things. Praps we can make further suggestions here…
Hi JayCS, I have tried so many things over the years, I can’t remember most of them. Some of them have been mentioned on here, and some I have read about in magazines. Glucosamine/chrondroitin/MLM was one from a store, along, with stomach things like peppermint oil caps, and silicol gel. I can’t find my fibro book at the moment to sort out many more, but COQ 10 I remember and magnesium. I think if I could sort my stomach out my back might relax a bit. At the moment I feel like I am trying to swim through treacle and getting nowhere. Most of my friends have passed so not really anyone to talk to-doctors are useless. I also tried an osteopath or chiropractor, can’t remember which, but I went 3 times and was in a lot of pain after so gave up. Then he suggested a deep tissue massage, and my husband does a soft massage and even that makes it worse-so told him ‘no thanks’. I just wish I could get out of bed one day-and be pain free, even if only for a few hours, would be good. Things are getting so expensive here right now I don’t know what to try any more that we could afford and would help.
Hope your flare even out a bit soon, and thanks for listening.
Yes, when good doctors and friends are missing it’s so much harder to see targets to get out of the treacle.
Thanks for trying to remember! It’d be good if you could find your fibro book, as the treatments you’ve now mentioned are neither particularly specific nor well evidenced…
I’ll have a look at them first and then make/ask some suggestions…
Glucosamine/chrondroitin/MSM is supposed to be for joints, the first 2 for building up cartilage and MSM (sulfur) for ligaments and tendons. Neither have any evidence for fibro, and a British study in 2010 found these don’t help for osteoarthritis at all either, like might be expected from the fact that they’re found in cartilage.
CoQ10 can be helpful for all areas of fibro (and also cardiovascular issues), but other things make a more effective difference, so I’d start with other things first. (If there is enough money for it, the dose needs to be at least 100mg is high enough, taking it with meals (if it’s the normal form, ubiquinone).
Magnesium very much depends on the sort: Some of those advertised as good for pain, sleep etc. don’t help, some of them do, but are laxative. For fibro the sorts malate and glycinate seem to be best. But again, it’s like CoQ10 not focused on getting local pains down quick.
Osteopath or chiropractor both very much need to know what they’re doing or be prepared to listen to your reactions and your body. Chiropractors can be brilliant, but most can be really bad. Osteopaths are always far gentler, so I’d be surprised if you got a lot of pain from one, the body may “work” i.e. Ache, but still get better, or not. In all cases it’s important to give them a chance by telling them that it hurt.
E.g. for want of alternatives I’m now doing acupuncture with a third acupuncturist, this time Chinese, this time the treatment is hurting less, and I’ve often had pain after it, now from the 7th treatment on she’s changed the treatment quite a lot (needles in spine instead of cupping for the 2nd part) and that’s making a lot of difference and also not hurting at all once the needles are in.
A deep/connective tissue massage by a professional is something completely different to a normal massage by an amateur (or professional for that matter). Normal massages usually don’t help. Deep tissue massages may hurt while they’re being done - mine in a clinic hurt a lot on my very sensitive skin, but my whole torso felt light as a feather afterwards. A very big woman did it, who might not have known anything much about fibro (the physios in that rheum./fibro clinic all didn’t seem to). I thought she’s squeeze me like a fly. Actually she was a gentle giant. But her big hands ripped my skin apart, I thought. But directly afterwards: No pain at all. If I get the chance again I won’t say no.
My first recommendation for local pains, and cheap too, would be to use youtube “exercise” or “acupressure” videos for the specific pain. It might help first to find out if the pains are in (= OA) or around (tendons = fibro) the joints or both, but often the videos will help you distinguish the two or it doesn’t matter that much. My second would be to properly try out a massage gadget yourself (‘gun’ or ‘pistol’ we call it here, as we don’t otherwise have any…). That said I had to get an expert acupressurist to sort them out first. But who knows if I’d realized self-applied acupressure and the massage gadget is effective… If you can’t find appropriate exercises etc. yourself, don’t hesitate to specify your pain areas.
But you thinking praps your stomach has the highest priority I think it’d be good to follow your gut instinct as it were, because it’s a focus on one thing with a higher motivation.
You’ve tried peppermint oil caps and silicol gel. I wouldn’t be at all surprised if they didn’t help and even peppermint harmed greatly - the gel doesn’t help me either and peppermint is one of the worst things I can do for my hyperacidity and IBS, I can’t tolerate it in anything, incl. toothpaste, mouth gels or a whiff of it … Neither are guaranteed, since gut problems are very individual.
More important before looking for treatments is in my experience looking for triggers and eliminating them and in the process perhaps seeing the difference between hyper- or hypoacidity in the stomach and esophagus and IBSD or IBSC or both in the gut. This video https://youtu.be/7ENMwTB4LlA is only the best rough guide for starters, quite some of it don’t fit for me. A second, radical way of doing an “elimination diet” might be to reduce to 3-5 foods you are sure your tolerate for a few days, until everything’s calmed down and then start adding the foods you think are least culprits. Another way might be to stop food groups like meat, then dairy, praps both, then gluten, then FODMAPs for at least a few weeks, best a few months (starting them again if they seem OK). A fourth way is aim for a healthy diet first, if you haven’t managed that yet, best there is stopping processed foods (removing simple carbs) and saturated fats. Altogether it’s emotionally best not to think of it as eliminating bad things, but looking for new good foods you and your belly have always been waiting for…
Have you tried a food/stomach/gut diary before, if so why do you think it didn’t work?
Feel welcome to describe all the difficulties… we’d be glad to point to your fastest further ways to get out of the treacle…
Thanks Jaycs for your long and detailed reply, so kind of you.
I’m afraid I can’t find my fibromyalgia book I have been searching for. With moving twice in 7 months I’m thinking it must have been mislaid or it might still be in a box somewhere, but can’t find it.
I did think of getting more Glucosamine/chrondroitin/MSM but won’t now as it sees to be no help as you said. Holland & Barrett do one as well, but can’t remember the name and I think it is probably the same sort of thing. Do you think I should try the C0Q10?
I don’t really think the osteopath had much knowledge of fibro although he did say he had another person with neck problems from it. I didn’t seem to begetting any benefit from the treatment anyway, so I stopped. My body did stop hurting a while after seeing him but wasn’t a thing I enjoyed and was getting expensive.
Have tried acupuncture a couple of times over the years and also tried the herbs they sell to go along with it-you have to boil them first etc. That didn’t seem to help either.
My stomach has been a nuisance for years, and have now tried eliminating certain things form my diet-again. Mostly dairy, and also chocolate, bread and cakes. I did use to keep a food diary for some time years ago, but when I had to go see a Gynaecologist years ago he said it was a waste of time as food takes 2 to 3 days to go through the system so wouldn’t really know what was causing it.
I had my doctor appointment (all 15 minutes) yesterday, and after prodding me on the right side, after I mentioned maybe it was my liver, said I need a scan, yet just before Xmas she said it was ‘probably’ a trapped nerve causing all the pain there. Also prodded my spine a bit and now she reckons it might be osteoporosis and/or something crushed on the spine. Just what I need to go along with the arthritis and osteoarthritis in the hips. So now have to wait for the scan and also an ex-ray on my back, don’t know how long that will be. I think until I have those and they figure out (hopefully) what is going on, will hold off buying any more things that may help.
I decided to focus more on my back as that has been really painful lately, so will see what transpires after the x-ray.
Thanks again, SueT.
- Instead of your FM-book my treatment list might jog your memory?: Fibromyalgia References: Triggers, Symptoms, Treatments - & Hunting & Tracking them - #34 by JayCS. Mind you I still need to add my long supp list - my, have I come far in the last year!
- So something else.
- Yes & no… Yes, cos CoQ10’s always “good”. No, at least not yet, because it may cost you time and money, and I get the feeling you want something quickly effective and not just “anything good”.
- Knowledge of fibro isn’t necessary for physios who listen. It being uncomfy and costly is reason enough for stopping now. Praps try a different one later and any other “physios” now that do something different?
- Acupuncture & TCM herbs: Good to hear, I haven’t tried again for fibro because I can’t drink their herbs hot, which they want AFAIK. Acupuncture: My Chinese acupuncture now has been helping considerably for two weeks now, far more than the stints before, increased my suppleness greatly, improved energy/fatigue from 10% to 20/25% (40% is my aim) up to now.
- Food diary not possible : What a low of absolute rubbish your gynecologist told you there! Yes, food can take up to a few days to get completely thru your system. But to conclude that all reactions come later is nonsense. My most complicated one was finding out that tomatoes caused my rectum to burn 24 hours later. But aside from that almost all my reactions (around 10 types) come inside of 20 minutes to 2 hours after the trigger, seldom 3 or 4. And he can have it from me in gold capital letters: I’ve sorted out at least 100 food triggers and can write an essay about the reaction to each food. Dunno if you read my blog - I put up my current food list, around 50, on Saturday, April 2nd… Not saying that it’s good for everyone, just that I know exactly what works for me and nothing else does.
- I have found that waiting for docs’ scans & ideas is usually a waste of time as they usually don’t find anything or can’t explain it or do anything about it if they do. Also I haven’t got time to wait, I do everything parallel. That way I’ve fully worked thru two big conditions in 2 years, with 50 docs and 100s of treatments. Of course we need to focus on one thing, prioritize. But having to wait for one doc always gave me room to do something else while I’m waiting. When the results are there, that’s when I go back to that one. But if buying isn’t the situation, then I’d use youtube to try exercises, stretches and acupressure, plus the education for the symptom I’m focusing on. That won’t harm even if if the scan & x-ray tell you what it is and what to do, which is highly unlikely… They will likely have a sledgehammer (e.g. med) for you to shatter your body with so you forget what you asked them about…
Of course: If we can’t see any patterns at all when using a food diary it doesn’t make sense to keep going like we are, because we may be eating too many triggers. That wouldn’t mean stopping the food diary, it’d be stopping the triggers, i.e. doing an elimination diet, either quick & radical by going down to few (if necessary about 5) very tolerable foods and adding again, bit by bit. Or by leaving off food groups for up to a month or two at a time, that’d be meat; dairy; gluten. There are a few other types of elimination diet too. And generally eating healthy: No processed foods, no saturated fats, no simple carbs. Mainly veggies - preferably self-cooked, and apples.
I have been trying for a while now and have cut out most dairy produce, don’t eat bread or cakes (with a very ocassional one) very rarely eat meat except chicken sometimes. No processed foods, and never fry anything. Plenty of veggies, carrots, potatoes, greens like spinach etc. So far not too sure but know dairy doesn’t much like me. I will go back to the food diary and see what I can come up with. Have been having problems with the lap top so takes a while to get back here.