at my wits end - any thoughts?
Posted , 11 users are following.
I don't even know where to start but below is a list I made up - I have not been diagnosed with fibromyalgia, my rheumatologist touched a couple of points on me and after a few meetings with him he queried psoriatic arthirits with no real proof, I am seeing him tonight and demanding he try the 18 touch points - I have lived with this pain & discomfort for way too many years, it's really affecting my daily life, movement, everything - it's flaring at the minute so I feel really bad, but take a look, tell me what you think - sorry it is so very, very long !! - I just don't know what to do, noone is listening because they can't see it and I carry on every day 'doing' what I always do
Pain is on both sides of my body
Pain & little movement in neck & shoulders
Pain & little movement in upper back / middle back / ribcage / armpits
Occasional breast pain (where tissue joins bones)
Very stiff on waking, especially feet / ankles, hobble to toilet – then it lets up and dulls to its usual general ache – some areas highlighted some days not others
Shooting pain to elbows
Shooting pain down legs to knees
Pain in back of knees (feels bulky if I try and kneel down like there’s something there)
Pain across whole of lower back with intermittent stabbing pains (sometimes sciatic like) on occasion this makes me limp (deep inside buttock)
Pain in hips
Tingling in groin area
Dull ache in legs (gets worse after climbing a few steps)
Pain in buttocks
Pain in back of thighs, burning, throbbing – sometimes feel like they are on fire at night before sleep
Sometimes feels like chair / tights are melding into the skin on my thighs
Cramping in thighs and feet if I stretch too much – not had this for a while
Teeth grinding / bruxism (seemed to stop when I started taking the amitriptalin)
Pain / aching in back of calves
Pain in ankles and feet (arthritis in big toes)
Swelling in ankles and feet
Front of knee pain
Blurred vision
Sporadic bouts of IBS symptoms
Flu like aches & pains
Occasional headaches (2/3 migraines with aura)
Occasional tingling in legs/thighs like an electric shock – requires immediate movement
Deep muscle ache, throbbing and sometimes sharp or shooting pains
I have been diagnosed with depression twice in my life (post natal) and again a few years later
I am in general very moody (or so Im told) I would not be surprised if I do suffer from depression but on a mild level, I still function, get up every day, go to work, go through the motions
Confirmed: plantar fasciitis & arthritis / secondary arthritis in big toes
Pain: dull ache, throbbing, sharp stabbing, pins & needles (hands / feet)
Rheumatologist: queried psoriatic arthritis (sulfasalazine, amitriptyline, naproxen)
In general:
Today 23rd April 2018 I feel like I ran the marathon at the weekend my hips /thighs/buttocks/ legs feel so heavy and sore and tired
A lot of numbness/throbbing, but how can it be numb when I can feel it – it feels numb
Sensitive to noise, ringing in ears
always tired, even though I sleep well (I think) wake up early hours a lot, husband says I fidget constantly throughout the night. He also says I snore really badly and stop breathing. I fidget constantly because it hurts too much to stay still
Cannot sit / stand in one position for more than a couple of minutes – creates numb aching throbbing points. I can never get comfortable, if I go out with my husband we tend to come after no more than an hour because I just can’t sit still / relax comfortably anywhere for too long
Body feels heavy, like I’ve done a really hard gym session, but I’ve only walked a few steps – bit like DOMS? – this is definitely getting worse
The pain ebbs and flows, sometimes I think I can’t stand it anymore (which is when I go to a doctor / physio about whatever is hurting the most) sometimes I think (rarely) this must be what it almost feels like to be pain free (short lived). Tends to all get worse when I am approaching a period/ flu / colds/ infections
I get confused my husband tells me he often tells me he has told me things but I have no knowledge of him having said it. I sometimes speak gobbledy gook / two words together to form one word, mixing them up (old age lol)
I have poor memory but think that may have gotten better of late
I can’t remember when it started:
15-20 years ago I had my upper back taped up by a physio (muscular skeletal?)
7 years ago the pain in my lower back started, buttock pain, throbbing in back of thighs
I recall around 6/7 years ago crying because I didn’t know what I was supposed to do with all this pain
I recall calling my husband to pick me up once on my walk home because the pain in my upper back was so bad I could hardly breathe – standing on the train home is a nightmare I can’t stand on one foot for more than a few seconds, and need to constantly move
Coldsores on backs on thighs / lips on ocasion
Currently flaring (April 23rd):
2/3 physio sessions - triggered the flare?
Last 6 weeks making sure I do 10k steps plus per day?
Very hot weather?
Headaches after physio sessions
Diarrhoea / mild ibs symptoms (occasionally)
Feel really quite fluey
Whole life is stressful – 1.5 hour commute each way each day, prolonged sitting at a desk (stressful pain in upper back/bum/lower back/thighs) @ home – jobs, jobs, jobs
April 24th:
Blood taken this morning – it was so painful I have never had blood taken that hurt so much
By 12 noon am jiggling about on my seat, thighs throbbing, back aching, hips aching / throbbing, not sure what to do with myself
Ache in pelvis, buttocks, groin, lower part of body from lower back down feels so heavy and tight
I don’t believe anyone lives every day with pain and discomfort like this without knowing what it is – it has to have a name?
0 likes, 21 replies
mand2020 tracey89042
Posted
It's so frustrating. Keep thinking I will tie myself to a chair in the A and E, not leave until someone tells me what is happening to me. I look back at past photos and say oh I wasn't in pain then. Tired so tired. Real sorry to read about your situation. I wish you well.
rickesh31278 tracey89042
Posted
Hi Tracey
Sorry to hear about your plight. Fibromyalgia is mostly inflammatory related and because it is all about the immune system being dysfunctional it is really difficult to get to the bottom of things.
Issues are mostly threefold viz. abnormal propioception resulting in disproportionate pain perception, lack of energy and cognitive disturbances resulting in mood disorders and the third issue is reduced mental acuity.
It is not productive to target any single pathogen because this is broad based immune dysfunction and there are possibly multiple triggers. Even excercise is pro inflammatory and therefore if you excercise in excess it will result in a crash. So the trick is to reduce the inflammatory load as much as possible. Each patient is different and hence it will take you many years before you fully understand what is going to trigger your attack. These limits must become the framework of your daily functioning . Breach it and your body will trigger circuit breakers that will put you into “sick” mode.
This “sick” mode essentially floods your systems with inflammatory cytokines which has a broad based effect on most bodily functions.
You develop euthyroid sick syndrome and energy levels fall of the cliff. Thyroid hormones are needed for dopamine and suboptimal dopamine levels results in depression or cyclothymic mood disorder. Patients will have widespread issues such as poor social interaction, sleep disturbance and a general feeling of anhedonia.
Thyroid hormones are a master hormone in terms of all metabolic functions and this dysregulation results in almost every system being affected.
Muscles are tender because they fail to relax fully. Even hormone production is affected resulting in possible sexual dysfunction, abnormal blood sugar regulation, hair thinning, abnormal lipid profiles, sensitive to cold temperatures etc.
Hence the trick is to address the issues individually and symptomatically since turning off the immune system is not an option. Dampening it with steroids is short term relief since use of steroids long term has its own set of problems.
The idea is to focus on pain management, energy management and then addressing cognitive issues.
Remember that these symptoms will be worse on certain days and then not so bad on certain days. However it is chronic long term affectation since your immune response is never switched off. Therefore you need to constantly monitor your level of ill-being and use what you have in your armament to respond appropriately.
This will involve you learning how to use a wide array of medication almost on a daily basis. Your meds should not be fixed dose broad spectrum daily regime but tailor made by you on a daily basis depending on how you are feeling on that day. Hence cognitive therapy is a huge part of this. You need to know how you are feeling on that day and respond in a savvy appropriate manner.
This response is going to be both pharmaceutical and non pharmaceutical.Meditation and yoga is very helpful.
Some days may require you just to get off the couch and go out for a walk. Other days might need you to take a Modafanil because you know that your energy is flat and your work demand is going to be huge for that day.
Pain management can involve a COX 2 inhibitor but because a lot of this involves central “issues” paracetamol seems to potentiate the analgesia provided by NSAID. Try CBD oil and/or THC oil. These are excellent muscle relaxants and provide a certain amount of analgesia. Avoid alcohol.
The energy issues is addressed with thyroid hormones. Eltroxin must be taken daily and T3 can be used as rescue medication. If energy levels fall then omit eltroxin on that day and take an appropriate dose of T3. Learning how to use T3 is a lifesaver and dramatically improves quality of life.
Anti depressants that target dopamine are a good choice. Deprenyl is safe. Wellbutrin also increases energy levels.
Except for thyroid hormones(Eltroxin) all other meds should be tailored according to symptoms.
Ritalin will increase energy by having effects on the mitochondria plus it will have positive effects on dopamine. However the body will develop tolerance to Modafanil and Ritalin and therefore you must use them sparingly.
Finally when you feel acutely ill reduce physical and mental demands on your body.
Remember it Is called yuppie flu for a reason. These individuals tend to be high achievers and more “tuned” in. Unfortunately something went wrong.
Good luck and don’t forget to stay positive.
lesley59234 rickesh31278
Posted
Wow, this is one of the most well thought out and understanding messages I've read on the subject of fibromyalgia. Thank you very much. At the moment I am having a good period of respite from my symptoms, about a month ago I started taking high strength Tumeric capsules and CBD oil under the tongue. As I don't know if it was either of these two acting on their own, or a combination, or just coinciding with a good spell, I intend to do some experimenting over the next month. I'm going to carry on with the Tumeric capsules and stop the CBD (the CBD oil is quite expensive compared to the Tumeric) and then do vice versa depending on the results. I am still taking my prescribed medications (amytriptyline, coedine, paracetomol, fluoxetine as tablets and diclofenac as a gel, but I am definitely using less coedine and less diclofenac.) I will post my results on this site.
tracey89042 rickesh31278
Posted
Thank you so much for this reply, am going to print off and really read it thoroughly - it's very useful, am very uncomfortable today, wriggling around in my seat because I'm so uncomfortable, so some of these things might help me - thank you
rickesh31278 lesley59234
Posted
I am glad my reply was helpful. Turmeric is most certainly helpful. Remember to buy turmeric capsules with piprine in it as this increases the bioavailability of the turmeric. Try out the other Auyervedic products such as Rumalaya and ginko biloba as they work as adaptogens and help in stress management.
I am glad that you are trying to cut down on codeine. Opiates are not reputed to be helpful in fibromyalgia and addiction and abuse are a real threat.
Although I do not like to target any specific pathogen I strongly believe that these issues arise because of “ Trojan” viruses wreaking havoc on a fragile body.
Dr Pridgen”s theory of it being the Herpes Virus sounds most plausible as we are all infected by it. Herpes is reputed to be better than love, it is for life. So it sits in your systems and attacks whenever your defenses are down. A therapeutic trial of Celebrex 200 mg twice daily and Famvir 400mg twice daily for ay least 4 months folllowed by Famvir 400mg twice daily for at least a year is said to bring about 80 percent improvement in many patients. Use it together with cimetidine 200mg three times a day and 400mg at night. The cimetidine has a 2 fold purpose. It protects your stomach plus it helps kill of the herpes virus.
Dr Pridgen’s protocol will make you feel worse for up to 3 weeks after starting it due to a “die off” reaction to the virus.
Guanefesin was also reputed to be helpful in fibromyalgia. I think this is more because of its muscle relaxant properties that it had.. It is an OTC medication known as Mucinex. Start with 400 mg twice daily and increase gradually.
I hope this information helps with your arrest at healing. Unfortunately less than 1 percent of Physician’s truly understand fibromyalgia resulting in patients being in the dark. However with the advent of new medication, especially the “biologics”,a class of medicines that target inflammatory mediators like TNF, I think that the tide is slowly turning towards the patients favour.
The BCG vaccine is also thought to compliment the immune system. Most doctors do not keep it. It is cheap and only one or two doses are needed. This vaccine is standard in 3rd world countries. Co incidentally illnesses such as MS and fibromyalgia are less frequent there.
Finally what does not kill you must make you stronger. Don’t give up the fight. Let the pain make you more appreciative of all the other good things you got going for you. Frequently people who have everything going for them do not count their blessings.If it makes you a better human being then in the end the pain becomes worth it. It becomes part of God’s grace.
I hope this strikes a chord in your heart.
Good Lick.
rickesh31278
Posted