Possible new fibro sufferer looking for help and advice
Posted , 7 users are following.
hi. I'm a 44 year old man who's had pain pretty much everywhere on and off since November. My doctor thinks it's fibromyalgia and has referred me to a rheumatologist. It fits my medical history and possibly my family's too. I'm just looking for help and advice about how best to cope with the pain and fatigue.
It all started in early November when I had pain at the base of the spine that spread to the abdomen, hips and thighs and was constant 8/10 pain 24/7 for two weeks. That may have been an infection. Towards the end of that I started getting chest pain, which spread to be sternum / left sided pain, upper back, neck and left arm pain.
That’s since spread and I’ve had pain from the top of my head, a few headaches, neck and jaw pain, chest, upper back, lower back, under armpits, both arms, hands, abdomen, hips, groin, thighs, adductor (inner thighs), right calf, occasionally feet, and pins and needles in my hands and feet.
The pain tends to come when a set of muscles is used – bad chest / upper back pain after carrying shopping home, thigh / hip main after a long walk, hand pain after playing badminton, wrist pain after gardening. My body generally feels painful if pressure's applied, like when my dog sits on me. It's generally best when I wake up and worst in the evening.
Looking into fibro online it wouId bit with my medical history. I had glandular fever badly at 18, had to drop out of university and was bed ridden for a month or two. Have woken up feeling tired pretty much every day since my early 20s. Have always thought I had CFS, but have never bothered getting a diagnoisis. Had my GP look into it 20 years ago, he did blood tests and they all came back fine and he didn’t take it any further. In my last job I ended up taking a 100mg caffeine tablet in the morning, drinking 6-7 cups of coffee a day, and still felt shattered all day and often slept through my lunch hour.
It would also fit in with my family medical history. My dad and sister both have Hashimoto’s and my dad had ME badly in his 40s. He had a year off work and couldn’t get out of bed for several months at first. I just have some anxiety it could be something worse as my mum died of cancerat 50. My doctor doesn't seem to think that's a possibility, just my anxiety. Fibro does seem a far more likely fit for my symptoms.
I was just wondering how people deal with the pain and fatigue and what they recommend. I've found Olbas oil works well on my torso, and am taking magnesium, vitamin B12 and D3, curcumin and ginseng supplements, and trying to bathe in Epsom salts a couple of times a week. Any other suggestions would be more than welcome. Thanks.
0 likes, 17 replies
linda18441 Tomatom
Posted
Tomatom linda18441
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Yikes that's sounds awful. I'd really struggle with a new job while feeling this tired and in pain. I hope things improve for you.
kiki74 Tomatom
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I too had a bad case of epstein barr or glandular fever. I actually just had it reactivated. It's rough. Your taking the same supplements that I do except I am not on ginseng . I also take Sam e. It helps with my mood and anxiety. I would also recommend watching your diet. Foods can often trigger flares.
Tomatom kiki74
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thanks Kiki. I've been trying to see if any foods trigger pain but haven't seen any obvious connection. I'm pretty sure I'm lactose intolerant so try to avoid that, and I might be sucrose / sugar intolerant too. I tend to get a blocked nose after eating anything dairy or sugar filled.
kiki74 Tomatom
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I know you mentioned hashimoto runs in your family as it does in mine. I just got retested and I'm getting the results on Thursday. I read an article that people who have had autoimmune diseases can have It and can actually coincide with fibro. I tested normal in the past but since we're not normal the article said that we need to be at the loser end of normal to be actually normal. Thyroid medication might help with a lot of the symptoms we have because if we do have it we are getting a double whammy.
Tomatom kiki74
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It's definitely worth checking your thyroxine levels. I had a TSH level of 0.96. the reference range is 0.3 - 5 so my level's low but not abnormally so I guess. Are you getting any of the other thyroxine tests done (T3 and T4)?
kiki74 Tomatom
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Just got my results yesterday and I tested under 1 too. Which would rule it out for even fibro sufferers.
But as luck would have it, I now have pink eye after going to the doctor for tests. Can't catch a break!
Kubie Tomatom
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Im kicking myself for not knowing about this for 7 years of suffering. it was an accident I figured it out because the results were dramatic after buying one. I could never figure out why I would have a random good day about 2 or 3 a month. It turns out...randomly...I might eat a few pieces of pineapple at a catered event or on a video shoot whenever there was fresh cut fruit..with results happening about 48 hours later!! No wonder I never made the connection.
The most potent part is the core. I also chew/suck on a core piece after I eat about a half cup to a cup of pineapple. I spit out what is not chewable. The highest concentration of the enzymes are in the core.
No pain medication has matched it. I knew it was the pineapple after I bought one to replant the top as I started growing my own romaine and was reading about what other foods you can grow at home.
The best cutting technique is to cut the top off and place it upside down in a tupperware lunch container and keep it in the fridge. Do not peel. Must keep rind on. Every day cut off about a 1/2 inch or more slice. Every day it ripens more and the juices flow to the bottom to the next slice.
Please do this and report back on results. Also you need to make sure you have been formally diagnosed with fibromyalgia.
Kubie
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Juices in. Also...if you buy a pineapple do not cut it until it smells like a pineapple. That is how you know you can cut into it.
Kubie
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was about 80-90%.
Lyrica was only 20-30% pain resuction. Enough to get me to sleep.
bronwyn97278 Kubie
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Thankyou kubie; this is the 1st time I have heard of "using fresh pineapple" for the pain-relief of Fibro; and am so pleased that we can trial a natural food remedy. I am very thankful for your piece, and will certainaly do same. Bron
Tomatom Kubie
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Zio10 Tomatom
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Have you tried Cymbalta. It is an antidepressant used for pain. It comes (in USA) in 20, 30 an 60mg I took 30 then went up to 60 for 5 wks. It did help considerable with pain but blood pressure shot up. I dont normally have it. So it freaked me out so stopped. I have depression and anxiety so have been dealing with that rt now. Alot of depression symptoms can cause wide spread body pain. Have you been looked at for depression? Im hurtin alot these days. 48. Alwsys touchy in places. EXTREMELY sore beyond words when I do anything out of ordinary or any work. Its horrible. Hot baths, epsom salts, 3 ibuprofen, . I take 3,6,9 omega, magnesium, can't take b-12 cause for some reason i dont pee out extra it builds up! It was over 2000 an normal high is 940! So no insurance either so cant go see a rheumatoidologist to expensive. Alot of Dr just don't get it!
bronwyn97278 Zio10
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Hi Zio and Tomatom; I am sorry to say that I trialled Cymbalta (as it is a recommended drug for Fibro), and prescribed by my Rhuematologist.. However, after a week or so, I realized that NO pain relief, but a LOT of crying for NO reason. So stopped and went back to feeling "human" again. My advice for anyone trialling Cymbalta, watch for these symptoms, and if no benefit for your pain, then don;t continue. There are many other meds/therapies out there that work better
Tomatom Zio10
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Thanks Zio. I don't think it's depression. The pain's been getting me down but I didn't feel depressed before the pain started. I suffer with SAD so always struggle with winters, that might tie in. My doctor's given me a low dose of amitriptyline (10mg a night) to see if it helps with the pain. So far it's just making me feel tired and nauseous and given me a dry mouth. I think it takes a few weeks to work so am going to wait and see if it helps.