at my wits end - any thoughts?

Bones, joints and muscles
1

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?

 

 

2

Hi I have been diagnosed with fibromyalgia and rheumatoid arthritis and what you’ve described is my life on a daily basis, I work full time two jobs as a nanny and healthcare assistant, I couldn’t imagine how painful it is sitting all day, my job is very active and I find it helps, very tiring and I can’t overdo it but it helps, also have overlapping conditions, IC, IBS, endermetriosis, RLS, eczema, dermatitis, asthma, allergies, Ménière’s disease, sinusitis, dental problems and constant bacterial infections, which makes it seem unbearable at times, I find flares are food/drink related, over doing it, not doing enough, not sleeping at the same time or poor sleep, animals and allergens and uncomfortable clothing/bedding ect, once you figure out yours it makes life easier, we are generally more sensitive than others, hope you find some relief soon smile 

3

Google -fm test

4

To me, but I'm not a Doctor, just a sufferer, it sounds like absolute classic fibromyalgia! I'm not saying there is any one thing that will magically cure it (sorry) but there are various medications which can help, it's a matter of getting the diagnosis (from a Doctor who believes you!) and then trying the different medications until things settle down a bit. Personally I find the 10,000 steps too much for me so I aim for about 5 - 6,000. Good luck and I hope you find something to help soon.

5

Tracy,

I’m sorry you’re having such pain.  I’d get a second opinion.  I was diagnosed with fibromyalgia, myofascial syndrome complex.  I’ve had it since 2000.  I have arthritis all throughout my body.  IBS too.  And CFS.  I would definately get a second opinion!!!!!!    

6

Hi all ... many thanks for your responses am seeing the original rheumatologist tonight to get him to definitely rule out or rule in fibromyalgia and if Im not happy with what he says / does will definitely get a second opinion - thanks for all the advice, including things to take (which Ill try) and the bloody test (which I'll push for if I can't get any joy anywhere else). How on earth do I figure out what causes the flares, and even what is and isn't related when there's so much that goes wrong :-( ... I've just started having physio I am pretty sure that has started this current flare but who knows it could have been anything :-( will keep you posted once I see rheumatologist tonight 

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Good luck for tonight, have you tried keeping a diary? What you do, eat drink ect. Also google complete list of Fibromyalgia symptoms, there’s loads smile 

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thank you and actually no, but a diary might help (as would losing some weight lol, but that's a whole different mental battle) I should do that and OMG the list of symptoms is unreal, but I can relate to nearly all of them !!

9

Yes and I found thinking back I’ve probably had this my whole life as it can start with the randomest things, I lost weight with juice plus it’s expensive but worth it, diet and exercise is definitely a huge part of gaining some level of control over it smile 

10

Tracey89042 - I most certainly am no doctor but the Rheumatologist I went to after five years of unexplainable pain when nothing seemed to be wrong with me, used all the points your doctor ignored.  There are books all over the place about FMS and they all describe the symptoms you have described above. Yes, even getting my nails done is out now because the pain is so bad in my hands and arms re: position plus sitting long enough for the manicurist to finish the job is like getting my finger nails pulled out.  I truly recommend instead of going to that same doctor again and demanding he do something he should already know to do, call the Arthritis Foundation and tell them what is going on with you and ask they recommend you to a Rheumatologist that understands FMS.  Make a list of everything before you go from IBS to foot pain when you walk, to headaches and dry eyes to lack of sleep due to pain etc etc.  Has anyone done the trigger point test on you?  I'm sure you know there are no blood tests to prove your condition just as there are no blood tests to prove MS.  It just takes getting to the right doctor who gives a hoot about patients with pain.  I'm so worried about what the government is doing with controlling pain meds.  I understand the abuse but what about folks like us that live every minute of every day in pain levels going from 5 all the way to 10.

NOTE:  I worked for many years with FMS, Graves Disease and Heart Disease as well as spinal stenosis and felt working was my salvation as it kept my mind off my pain and gave me purpose.  During working hours I didn't take anything for pain as I knew I had to be at my best; I owned my own accounting business.   But then one day after many years of working like a trojan, I realized the pain was so bad I couldn't concentrate and by the time I got home at night I was worthless to my family.  That's when I had to accept other options.  And that's when I realized FMS pain isn't the same or the same intensity for any two people.  Taking anti depressants to overcome pain and depression from constant pain backfired and I tried to commit suicide.  Now my only choice is limited, I owned my own accounting firm and those days are over.  But I pray a lot that God help me cope and that I don't bore everyone around me complaining when they see me as a healthy woman who could have would have has been.

FMS is more accepted now that it was 10 years ago but even so, families and friends and even doctors just don't get it.  How could such a healthy person be overtaken suddenly on a shopping trip with fatigue. How could a healthy looking person have so many complaints and still be walking around without a walker.  How could such a healthy person not work with the woman down the street that says she too has FMS.  We are all alike and one thing to keep in mind - FMS wears you down not only physically but mentally because as the years go on and you have no one that you love that understands and folks start pulling back because they don't want to hear about your pain again,  When you finally realize that FMS belongs to you and there is no one who can give you relief, then the mentally drama will start IF YOU DON'T WORK HARD AT KEEPING THE BRAIN FOG AWAY AND LETTING DEPRESSION RULE PAIN. 

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Hey all, so last night I saw my rheumatologist and went along with a long list of things that ail me, in the past he diagnosed mild psoriatic arthiritis but when he sat me there and asked me what ailed me I couldn't think of everything or only the things that were hurting me most there and then, so last night I had a list and he read and he said - it sounds like fibromyalgia, he did a couple of tender points nad some of them hurt - so he diagnosed fibromyagia and still sticking with the mild psortiatic arthiritis. I thought I would feel great that I had a name, but now I feel a fake, making a mountain out of a mole hill - I know never happy lol, gonna get some adjustments made at work though, I definitely need an up and down desk, sometimes my backside and back of thighs throb so bad I can't stand it - if I can stand up and work some of the time that will help - any advice you can offer me of what to do where to look, resources etc, etc, etc no new medication only what I was on, sulfasulazine for the osteo (which really helped the plantar fasciatis) I stopped taking amitriptalin becuase it made me so groggy in the day, so he's given me a replacement for that prothioden? naproxen I take but im not sure how much it does to be honest, and I have to lose weight I am over weight but have dieted for 30 years and all it got me was fat, I vowed this time last year never to diet again, it messes with my head really really badly, so I need to think about what I need to do about that and I need to try and do some light exercise, I tried walking but it really hurt my ankles and calves, so maybe walking but a little less and build up .. but any advice greatly appreciated - he suggested a sleep study, I think I sleep really well, but my husband says I stop breathing and I fidget constantly all night long, but that's because things go numb especially hips if I lay on them for more than few minutes ... thank you for listening XXXXXXXX

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Wow Tracey! Wow! You are going through SO MUCH! I was diagnosed with Fibromyalgia but never really went through testing for it. I brought to my doctors attention after I did a lot of searching on the internet for my issues and found that the last years worth of appointments all show symptoms of this disease. The one thing that really made my doctor take notice was when I told her that I had broken out in hives and welts when I would apply ice to my new knee replacements. That happened several times, then I decided to not go through that pain and now I can't apply ice to anything on me. Ugh. All the surgeries that I've had and I'm also allergic to ice? I'm sure though Tracey that you must have the fibromyalgia too. There is not one test that determines that. But if you have all the symptoms...... then..... hello~!! Take care!!

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Hi Tracy,  only a rhuemotoligist knows the testing. They will apply pressure on a lot of your trigger points.  I remember when my pain dr diagnosed me with myofascial syndrome and said it was going into Fibro!  I went to a rheumatologist and she diagnosed me. Said i had 16 out of 18 trigger points affected. If you’re not satisfied with the Rhuemy you have go get a second opinion.  I didn’t know what to think either. My husband thought I was becoming a hypochondriac.  I told him my pain was real. When I was diagnosed I thought thank God there is a name to this.  But like all of us with Fibro. The pain is real. And can be so debilitating .  No one can see it.  If you have access to a warm pool where you can do exercise and best of all a hot tub. You can find some relief. Ask your GP for some tramadol.  For when the pain gets intolerable. Try a pain dr.  Too many meds not good for you.  Keep moving. Sometimes I have a pity party. That does help. A good cry relieves the tension.  I’m over weight too. I’ve lost 50#. Had hip replacement last year and looking at a knee in the future.  I’ve had this for 20 yrs. due to a car accident. My heart goes out to you. But believe me keep moving. If you have to use a cane to help with your walking. Chronic fatigue syndrome goes along with Fibro too. Listen to your body. Take frequent rests. But KEEP MOVING!!!

May God Bless. Fibro is miserable.  

Lori

14

Tracey and everyone else        There is a medical test that can confirm FM and a vaccine to cure it . Google- BCG and fm or fm test . The US FDA is close to giving the ok for a large clinical trial for the test and vaccine. I have had the fm problem for 45 years and took the test ( 82 score which is a high confirmation of FM ) and I’m enrolled in the  study . Insurance paid for the test

15

Tracey, my heart goes out to you, you're putting up with so much for so long! It all sounds so classical Fibromylgia and getting a diagnosis definitely helps, even mentally!! Did rheum prescribe anything for you? Lyric, Cymbalta? I don't like either but I'm surprised he didn't try something specifically for Fibro rather than an alternative to amytriptaline!! A couple of things you describe make me think you've other things going on tho, you're hips going numb during the night, could you have a bursitis on your hips? It's pockets of fluid in the joint, they can cause numbness and pain, especially at night. An xray or mri would show it and a steroid injection can help, worth asking about. Another thing I feel you have because of the extensive pain in you hips, buttocks and thighs and also your shoulders, is Polymylgia or PMR, (Poly mylgia Rhumatica). It's classic symptoms are deep pain in these areas, pain and stiffness in bed, the turning in bed, or finding great difficulty in doing so is a real tell tale for me, pain and stiffness first thing in the morning which eases during the day. Lifting arms and stiff shoulders and fatigue. also. Again so surprised rhumy didn't suggest a blood test to see what your CRP and ESR levels were at. They can be high but also can be low but with the symptoms can paint the picture of Polymylgia. However, the only real way to find out is to start a course of cortisteroids, usually about a 15-20mg starting dose and then reducing. Generally in the case of Polymylgia the improvements are startling, usually within a couple of hours you can be pain free. I honestly would seek an appointment with another rheumatologist and go armed with all your information. I have Fibromylgia, Polymylgia, GCA , Osteoarthritis Psoritis, so you can have them together. So don't be fobbed off that you can't and I'd almost insist on trying a course of steroids to see if it makes a difference, you're gp could even prescribe you, tho if yours is like mine she won't make a decision, leaving it to the rheumatologist!! Hope you can get to the bottom if this and get some relief. Please let us know how you get on😊

16

Hi Tracy again 

I hope you get a chance to go to another rhuemy. And get a second opinion. Some things can mimic FMS.

Don’t let yourself be diagnosed with it without getting this second opinion. I know someone that was diagnosed with Fibro. And 5 yrs later found out it was her back. She is now doing well. 

I guess I can’t stress enough on this. My heart goes out to you. Pain is pain. I pray that you get some relief. 

Lori

17

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.

18

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.

19

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.

20

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