Could this be fibromyalgia?
Posted , 5 users are following.
Hello. I have asked this question sometime ago and the general opinion was that I probably did not have it. Some background female age 71 have arthritis in knees,neck and spine. Other health problems include rhinitis and asthma, IBS, Diverticulosis and gastritis. I am due to see gp next week. I am not sure if my symptoms are caused by the problems I have or possibly by having take ciprofloxacin which can cause fibromyalgia type symptoms. I also suffer from anxiety. Here are my symptoms.
Tiredness (but not exhaustion) especially on exercise. Hard to do housework etc. Digestive symptoms bloating pain low back ache constipation. Can't seem to get diet right. Obviously pain from arthritis but what make me think It could Fibromyalgia as well is the following Pain everywhere in the body although better at rest I can be sitting down and suddenly knee will hurt them foot different parts of back hands arms etc. The worst pain is upper back pain inside both shoulder blades it happens most after moving about say like cooking where you are bending and lifting. Horrible pain only thing that helps is heat and rest. The bloating causes back pain as well. It seems like the whole body is hurting lots of places feel bruised and sore to the touch. I never really feel well and don't like making arrangements in advance. The pain tends to be better at night although I don't sleep that well but better than I did. It is causing me so much anxiety. My gp although very nice seems to think everything is anxiety. I had to go out this morning and came back with knee hurting hip pain stomach bloat low back ache and pain in foot. I am so fed up with feeling unwell. Do any of you think this might be fibromyalgia on top of everything else. Thanks for reading this.
0 likes, 20 replies
libralady13
Posted
Forgot to mention shoulder and neck pain. The trouble when you are older everything is put down to arthritis and or anxiety. I can only take paracetamol for pain.
chris78293 libralady13
Posted
Not 100 percent but age and muscle structure also effects the joints and joint pain, your probably in the perfect age range to strengthen all muscles around your bones that are giving you issues, also inplement anti inflammotory diet, autoimmune paleo seems ideal for most but carnivore is another one.
But you'll to add what youve tried so far and it the muscles are burning, if its just the joints then its probably not fibro or myositis
loxie chris78293
Posted
Agree with Chris. I have OA and am in my 60's and some days hurt all over, not just joints. Rheumatologist said it's not fibro so I did some research into immune issues. Gut bacteria health seems to be a really important issue for us as we get older and eating the wrong things - even if your diet is considered normally healthy - is a prime cause. I am vegetarian and eat no junk food or refined sugars either but I do eat a lot of wholemeal, grains, etc., which I have cut down to a minimum and a lot of my stomach disorders and general fibrous pain has reduced dramatically. I still eat as much but I have also lost some excess weight - double benefit.
sukes libralady13
Posted
Hi there,
I'm sorry you are having so much pain. would suggest that you ask your GP to refer you to a Rheumatologist as with respect to GP's they are general practitioners whereas a Rheumatologist is a specialist in that field. x
chris78293 libralady13
Posted
I've seen this scenario many times but the doctors generally fail the public, usually want you out of there office and put you on some temporary relief drug.
Things like coffee enemas, cleaning up the diet, full body stretches, workouts, understanding of nutrition, D3, K2, Fish oil, proper electrolytes, magnesium, potassium, sodium ratio, supplementation will give you more help than any doctor, i was literally begging them as i felt i was gonna die from the pain and they looked at me with little care, trust me get the tests done if you feel you need to, but it sounds like youve already got ignored and treated like its in your head.
Eating nutrient dense foods will help, watch frank tufano on youtube, lots of nutrient dense foods he promotes, that people with bone problems would benefit from.
And a carnivore type of diet which is beneficial for a healthy microbiome, joints, muscle etc.
Get rid of stressful things in your life, and drink filtered water, get sun etc.
miriam65408 libralady13
Posted
Hi, I know I've replied to you on other threads but I don't think I've ever mentioned that many people who have taken ciprofloxacin or one of the other fluorquinolones (FQs) often find they are diagnosed with fibromyalgia, often along with CFs/ME.
Doctors are much more ready to diagnose these conditions (that often don't have an obvious cause) than to say for sure that the antibiotic caused the problems. The musculoskeletal symptoms are just about like for like if you read them as a list as every joint and muscle can be painful with burning, tingling, stabbing and just about every other sensation that can be described.
I admit I'm not up to speed with fibro but I have read that it often seems to manifest after some kind of trauma such as a car crash or serious illness - and these are exactly the scenarios where people are likely to be given an FQ antibiotic such as ciprofloxacin.Adverse reactions to FQs are well known for not appearing for weeks or even months after the antibiotic was taken so sudden all over pains for no reason are rarely linked back to a drug that was taken weeks ago. What does the doctor do ? Diagnose fibromyalgia!
Whatever you've got, libralady, I am sure your course of ciprofloxacin was the actual culprit as we have discussed your symptoms before. There is no cure for either diagnosis anyway so it's all a bit academic and I often tell 'floxies' to be grateful as Fibro is at least a diagnosis whereas fluoroquinolone toxicity doesn't technically exist (although the warnings are getting more numerous now). The advice you've been given above about diet is very sound and I tell floxies to do the same - eat healthily and cut out sugar and junk food.
The bloating might be to do with your good gut bacteria still not managing very well after the antibiotic killed them off along with the bad guys.
Anxiety is a well known FQ side effect, as is insomnia, depression and panic attacks. This is because it affects the central nervous system as well as the peripheral nervous system, the musculoskeletal, endocrine, cardiovascular and gastro-intestinal systems. In fact, it messes just about everything up, and the only cure is rest and time and patience. Yet doctors don't acknowledge it exists!
libralady13 miriam65408
Posted
Hello Miriam, Thank you for your replay. I hope you are well
I noticed that many of the people affected by these awful drugs are young and fit and have no health problems, so it seems certain that their terrible problems are caused by these drugs. In my case and I am sure others, it is hard to say whether what you are experiencing is a worsening of existing problems ,which could happen to anyone, or as a result of taking drugs like ciprofloxacin.The reason I posted on here is because in the past I had thought about Fibromyalgia ,but never quite met all the criteria, although my old gp did once give me a leaflet about it. I know that quinolones can cause Fibromyalgia type symptoms and that doctors just diagnose you with that. I am hoping in my case that it is just a combination of existing digestive and joint conditions, excaberbated by anxiety which has been bad this year due to various things. I entirely agree that my stomach is probably still messed up by the antibiotics. I have started eating organic yogurts but not taken any actual probiotics as most recommended to me are very expensive and we are on a budget. I am seeing my gp next week and have decided I will write down every down to give to her. Although I have managed to get a double appointment, 20mins is not long enough to discuss everything. I am not keen on going for anymore tests, but so be it if I have to. I am though encouraged by the fact that if it is the ciprofloxacin that has caused these flare ups then it is quite possible, but of course not 100% certain that I will improve during the next few months. Thank you for taking th time to post.
loxie miriam65408
Posted
Very interesting post Miriam and very informative, thank you. Highly relevant you mention anxiety, depression, insomnia etc as a side effect of FQ- these are prime causes of non specific pain syndromes - the body reacts to the adrenal overload and excess cortisol and pain is the result. Fibromyalgia is somewhat of a 'cover all' non diagnosis, "fibro" - fibrous tissue, "myalgia" = pain - so basically getting that as a diagnosis merely tells you what you already know - your muscles hurt. With or without diagnosis, the treatment remains the same - either try to find lifestyle changes that will alleviate the problem (diet, relaxation, etc) or accept that doctors will shove a prescription for something toxic at you and expect you to go away and leave them alone, they have no cure for these syndromes so it's up to us unfortunately.
libralady13 loxie
Posted
Hello and thank you everyone who was good enough to reply to my post. So a short up date visited GP this morning she examined me and afterwards hearing me wince as she prodded and poked she said that I have several of the tender, points for fibromyalgia. She said she can refer me to a rheumatologist to see what they think. She also said that if diagnosed I would probably have an exercise plan and the drug amitriptyline for pain. I have asked to be able to think about and let her know. She did say I could try low dose amitriptyline to see if it helps but I am not sure because of the side effects. She was extremely helpful and spoke also about anti inflammatory foods. So I am now concentrating on diet and my constipation and will decide whether to go back and ask for a referral.
loxie libralady13
Posted
Good thinking libralady. I was prescribed amitriptyline then gabapentin, both of which were really unsuitable for me, the side effects were not comfortable, although they've worked for others, just decided I couldnt cope with feeling so bad on either of them. Sounds a very good idea to try to get your digestive system working better, you may find that once it is, a lot of the trauma the body is feeling will subside as will the pain. Hope it works well for you.
miriam65408 libralady13
Posted
I would agree with Loxie that drugs such as amitriptyline and Gabapentin are not roads anyone should really go down without a lot of thought. Gaba is used a lot for neuropathic pain and works by damping down the pain receptors - which results in the pain receptors struggling to work harder to get the message across so you need a higher dose to dampen them down again (this is the simplified version of what I understand anyway!) . I've heard it's a nightmare to withdraw from if you take it then decide you want to stop it, mainly because your pain receptors will be shrieking out for it.
Amitriptyline is actually an antidepressant but I do know of some people who take tiny doses for pain. Chris posted earlier about CBD oil saying s/he'd heard of a guy who said it did nothing. I've heard from many people (including my husband) saying it works really well. I think it depends a lot on the quality, strength and dose. I believe it takes two or three weeks before you begin to feel any benefit. My husband says it lets him forget about the pain (from MS) and he sleeps better. It might be worth some investigation as it doesn't come with the withdrawal problems of some pharma drugs.
miriam65408 libralady13
Posted
Hi Libralady, you probably don't need to pay the extra for organic yoghurt as there's loads of beneficial probiotic 'friendly flora' in all live yoghurts (i.e. not pasteurised - these tend to be the cheaper fruity ones for kids and can be full of sweeteners and flavourings). Any natural yoghurt is good (Greek is my favourite, any supermarket brand but especially that German one!) and I add some frozen berries for extra nutrients (they do lovely bags of frozen berries too) . I think the key is to have different brands as, if you read the small print, the bacteria (good!) they contain varies from brand to brand. A variety of good flora can't be bad. There's also good bacteria in sauerkraut which is about a quid for a big jar from supermarkets. It's an acquired taste but I use it in place of sugary pickles. As Chris says here, nutrient dense food is a big key to improving health.
Hi Loxie as well, I think we're on the same page! Whatever the actual cause of the pain, the most optimistic course of action is to try to prevent further damage, whether to your nervous or musculoskeletal systems. The body has an amazing ability to repair itself if it's given the right tools. I'm on the side of the fence that says good nutrition is the key although I know many others (including the doctors) will say here's another drug that can fix that. We are what we eat. We have a very intricate bio-chemical system that takes a molecule of this, adds it to an atom of that, and creates our energy, our life! If we don't feed ourselves the right nutrients our metabolism struggles.
I talk about Ciprofloxacin and the other fluoroquinolones (Levofloxacin, Moxifloxacin and Ofloxacin) as these are my 'thing', but the more I've learned about them the more I've discovered that so many drugs along with household and environmental chemicals can cause us harm without us realising until it's too late. Our bodies can only take so much and will start to complain sooner or later. For some of us, we might have been born with a genetic deficiency which speeds up the process. Others might not have an ideal diet (my brother in law didn't 'do' anything green for example!) which led to many problems - and different drugs. So many people have nothing wrong until an infection or accident of some kind leads to them being given 'something', which starts their ball rolling - downhill.
As you point out, stress and anxiety all increase the inflammation and then there's the centralised pain syndrome - which I think might be the same as the non-specific pain syndrome. I know for a fact that one of the worst features of FQ toxicity is the all-over unrelenting pain - which is a completely different animal to the specific joint or tendon pains, not to mention the peripheral neuropathy! FQs - and many other drugs too - create changes to the endocrine system resulting in thyroid, adrenal and insulin problems, also to the central nervous system causing anxiety and depression - or worse. I could go on but my main point - and yours too I think - is that our medical system hasn't got a clue as no one person or department is looking at our bodies holistically. Each specialist looks at his one symptom and shakes his head. If you present them with anything that resembles what I've just written you've got an instant label on your notes warning the next guy that it's all in your head!
Stay strong, people.
loxie miriam65408
Posted
Totally agree with everything you've said Miriam. My horrible experience of a long awaited appointment with the rheumatologist ended with her getting very angry with me that I wasnt keen on just taking more toxic pharmaceuticals - she actually said 'i'm a pill pusher, that's what I do' (her exact words!) Hopeless. I appreciate that for some people, some drugs are life saving but GP's are so pushed for time, writing a prescription for something they've been told to push by N.I.C.E or a drug company rep is often an easy out. Holistic approach is not within the NHS remit for some ridiculous reason. Wrong diet - not necessarily bad foods but just those that are problematical for the individual, stress, adverse reactions to other meds, environmental issues - these are the major factors in a lot of non specific syndromes. My OA pain is specific, I understand it and I know exactly what causes it and to a limited extent, how to reduce it. Fibromyalgia isnt specific and it is a cover all term to indicate precisely that - non specific pain syndrome. It honestly is a waste of time in terms of obtaining relevant treatment to pressure for it as a diagnosis. The only benefit of having it written down on your records is to assist with claiming support payments etc., it definitely wont change the treatment you receive.
FMS is recognised as a reaction to something, whether it be a traumatic event or illness or adverse reaction - it isnt a 'disease' in its own right. Best advice is to find a diet that increases your immune health, find ways to reduce stress - eg relaxation techniques, meditation, mindfulness, gentle exercise is essential - nothing is better for increasing vascular and muscular health both of which will reduce inflammation and therefore reduce pain. Above all understand that fibrous pain is your body telling you that it's not happy and is under siege - it doesnt always mean it's fighting disease more that it's fighting trauma.
chris78293 loxie
Posted
Thats interesting about having fibro on paper as a disability as i've worked many years feeling unfit and sick but not sure how fibromyalgia/myositis appears on tests, seems unidentifiable to blood tests and muscle biopsies from what ive seen, did yours show up?
Its like a nerve pain, but its a blanket term to describe pain that can't be seen and very often inflammation of muscles or joints.
Would be nice to see conditions like cancer and fibro and MS and multiple others get people compensated in some way, treated almost like its nothing and if you can no longer move and work a labour job your stuck in the mud.
I agree with rebuilding and getting healthier, find a routine to maintain or get stronger, and im glad we can all come together and say whats helped and what hasn't because i spend long periods of time trialling things and feels so disappointing when it doesn't yield good results.
A guy posted earlier CBD oil did nothing, and that was something i was going to invest and trial so im happy to stay on track and eat a carnivore diet and train with my Ewot system and get healthy that way.
Vegan and keto zapped my energy and hormones, feel like i wasted the last 3 years doing those diets.
Aip or carnivore is what i recommend, but give diet a go for a while cause maybe they'll boost your energy for your exact issue.
But yeah this seems like the best forum ive found, good content and community here indeed.
loxie chris78293
Posted
I've been a vegetarian for a long time, not just for health reasons. I have an abhorrence of the thought of killing animals and I just couldnt go back to eating meat or meat products. I like dairy and dont want to give up the essential proteins from those products so I wouldnt consider being vegan. With my own circumstances I feel its grains that mess me up. Although whole grain and wholewheat are considered 'healthy' foods, we arent designed as humans to eat so much of them. I obviously cant follow a paleo diet without meat but I can reduce my intake of grains and it helps a lot.
chris78293 loxie
Posted
I like avocados and hemp and doing smoothies i sometimes cycle in and out of vegan and keto, but doing carnivore at the moment, my mum is doing well on a high fat vegan diet.
As long as your hormones are there and your feeling good keep it up.
I was vegan for nearly 2 years, but yeah hemp and avocados are safe imo, almond milk and not sure if grains need to be ignored sorghum and millet are both lectin free see how they work for you.
Gundry made the plant paradox and allows grains like those.
And when i do vegan flushes i eat papaya and bananas both unripe, (freeze em) resistant starches and serve with millet cooked in turmeric.
As long as the b12, iron and all is there through supps your okay.
miriam65408 loxie
Posted
Hi Loxie,
My previous reply has been deleted, probably because I named something I shouldn't to do with a doctor who might or might not have sorted her ms with diet. It was fairly long but mostly agreeing with what you and Chris are saying here about diets. I won't say more in case it goes down the pan again.
I wish you all well, especially libralady who started this thread.
loxie miriam65408
Posted
the moderators on here are quite eagle eyed. I always thought my diet was healthy - I do eat a lot but I never ever liked junk food or high sugar/high fat etc., and I dont eat meat. However, recent TV programmes on the subject of debunking so called superfoods etc and investigating further into drug resistant disorders have highlighted that it's more about what each individual body tolerates and how we as individuals react to certain diets. I was told a long time ago that nightshade foods (eg tomatoes, peppers, aubergines, goji berries, blueberries etc) would aggravate my OA - yet these tend to form the staples of a mediterranean diet and arthritis is low incidence in those areas - I did try removing them from my diet but firstly it did nothing re the pain issues and secondly my stomach kicked up a stink because those foods form a big part of my healthy diet. Gimics, fads, the next 'super food' and so on are a total waste of time for me. I dont spend money on supplements either - my doctor had my vit levels tested several times and they always come back within a normal range - so its a complete waste of money for me to start gobbling stuff I dont need and some of which could actually be harmful. Stress is a major factor for my pain levels - when I can relax and be calm, the pain drops. Adrenal overload and excess cortisol is a killer and affects the whole body and its efficiency. I was recommended to try Mindfulness meditation - it helps a lot in reducing my work stress and anxiety and that in turn helps my body to function better.